Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association

 
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
June 2014 Issue 121

                               40 ye
                                       ars o
                                               f re
                                                   bui
                                                      ldin
                                                             g liv
                                                                  es a                            y
                                                                           fter spin l cord injur
                                                                                    a

Paralympic
Preparations
see page 32

                                                    Hidden treasure   20        Power wheelchairs 36

  Brought to you
    through our
 partnership with                                   debate information real life
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Contents
                                               j u n e 2 014
                                               issue 121

forward message                                forward thinking
                                               Mailbox you write to us                                                                            4
I remember the first time I used                Q&A your questions answered by our experts                                                         6
public transport after my injury.
It was in the late 1980s and I                 In the news
                                               From sIA Meet new sia staff                                                                        8
travelled to London by train. I had
                                               updates from the sia information services and outreach services                                   9
to travel in the guard’s van as there
                                               agM & Conference l sia healthcare                                                                11
was no wheelchair accessible space             Public Affairs personal independence payment                                                      14
on the train. I don’t remember                 personal independence payment and Motability                                                     15
being surprised by the experience.             nhs wheelchair services l sia Discharge workshop                                                 16
However, on reflection, it is good              Fundraising running events l henry smith Charity                                                 18
to see the progress that has been              walking the gB Coastline for sia                                                                 19
made in making getting around                  hidden treasure l successful fundraising events                                                  20
easier and more comfortable for
disabled travellers.                           Features
     I hope you enjoy the variety of           Independent Living advertising feature                                                           21
articles on transport in this issue.           Book Review l Pain Research                                                                      22
     In the past week or so, full              sCI Research                                                                                     23
members of SIA will have received
details of those people seeking
                                               Anniversary section
                                               40th Anniversary Quiz another chance to enter                                                    25
election as SIA Trustees. Please               Ruby Corporate Partners Barratt, goff & tomlinson                                                 27
take a moment to review their                  Bolt Burdon Kemp                                                                                 31
profiles and use your vote!
     May I remind readers about                special section
SIA Healthcare. It will take the               PARALYMPIC PRePARATIOn
hassle out of ordering your                     Anna Turney’s skiing success                                                                    32
monthly prescription requirements               Inter spinal unit Games l The road to Rio                                                       33
and raise money for SIA at the same             A Paralympian in the making                                                                     35
time. It is a win-win situation!
     I am delighted by the response            special section
SIA has received to our Rebuilding             GeTTInG AROunD
                                                Power to the People a look at powered wheelchairs                                               36
Lives after Spinal Cord Injury
                                                Creating a designer chair the Carbon Black                                                      38
Awards event. Congratulations to                Getting Around with a Mountain Trike                                                            40
all those nominated for an award.               Public Transport when can we expect full accessibility?                                         41
Please ‘save the date’ of Thursday              Air travel for disabled people a look at the legislation                                        43
16 October 2014 when Williams F1
will be hosting SIA’s AGM. It would            forward matters
be great to see you there.                     Ageing and sexuality how to cope with changes                                                    45
                                               Technology we take a look at access to music                                                     48
Jonathan Fogerty, SIA Chair C5/6               Parenting wheelchair carriers for kids                                                           49
                                               Best foot forward our regular column for walkers                                                 50
                                               Motor Racing aaron Morgan begins a new season                                                    51
                                               Classified adverts Vehicles, equipment, holidays and bargains                                     52
forward is available to download
from the member profile area
on the sia website.                            Find out more about us at www.spinal.co.uk
                                                 the views expressed in forward are not necessarily those of the spinal injuries association. nor is
                                                 sia responsible for the use which might be made of the information provided. sia does not endorse
                          c Copyright 2014       any commercial organisations and acceptance of commercial advertising or sponsorship, or
                 spinal injuries association     editorial reference, should not be interpreted as an endorsement of the firms or products involved.
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
MAILBOX                                       Appendicitis
You write to us
                                                                                               strauther et al. (1999) carried out
                                                                                               a medical study to investigate
                                              and tetraplegia                                  appendicitis in people with sCi.
                                                                                               the research was carried out with 26
                                              in 1986 i became spinal cord injured,            males aged between 27 and 79. the
                                              C5/6, and at the time i had wondered             study found that acute appendicitis
                                              what happens if i get appendicitis?              presents itself late in sCi people and
urology                                       now i know…
                                                  throughout 2013, i had been
                                                                                               complications are common. it was
                                                                                               suggested that a Ct scan is an
advice needed                                 experiencing a variation in spasm –
                                              a spasm that arched my back sharply,
                                                                                               excellent resource to diagnose the
                                                                                               condition. Finally, it was concluded
I had a spinal cord injury in 1982            and an ache in my back in the right              that early intervention might prevent
(C4 incomplete) and have been living          hand kidney area. other vague changes            some of the adverse effects linked
fairly well with tetraplegia since then. I    were bowel issues, a bloated/distended           to pre-existing sCi injury.
have an ongoing problem that I would          stomach, even after toileting, and               For further information and
like to know if other people encounter        rather more frequent utis. however,              findings from other research
and if so, have they any advice as to         these were things that i’d occasionally          carried out among SCI people with
ways to counteract it or prevent it?          had before. i had no temperature or              appendicitis, visit www.aafp.org/
     I use Conveen Freedom Cath               autonomic dysreflexia and my doctors              afp/2000/0401/p2226
external catheters for my urinary             were happy with everything. My blood
management. I always seem to have             tests were fine so i put it down to age           Strauther, G.R. et al. 1999. Appendicitis in
                                                                                               patients with previous spinal cord injury.
some background level of infection,           (51-years-old) and having been injured           American Journal of Surgery.
without too much adverse effect. I do          for 27 years.                                    178 (5), pp.403-5.
have quite a low residual urine level in          in short, the doctors and i were
my bladder. My urologist has advised          wrong. eventually, in november my
that I have a certain amount of cystitis      system pretty much gave up. i felt            have not fully resolved. i hope that
in my bladder. I have one pretty good         terrible, experienced bowel accidents         i will be able to return to my original
kidney and one fairly damaged. My             at night, suffered with a                      condition in the next month or so.
problem is that when I am in my chair,        bloated/distended stomach and my                  all told, appendicitis is potentially
I frequently experience difficulty              blood pressure was variable. i had to         very serious and is best avoided. the
passing urine and get a feeling of            fly home from holiday and go straight          question is how to monitor it.
tightness around my lower stomach             to hospital, where a non-specific                  symptoms in tetraplegics seem to be:
area and groin. I get a certain amount        infection and very low blood salt, of         • Distended/bloated stomach
of sweating and sometimes headache,           108 units, were identified. i was treated      • Variation in spasm
although not usually of the dysreflexic        with antibiotics and fluid restriction.        • potential discomfort in lower
level. When I lie down, the symptoms              eventually, after gps had failed to       back or stomach area
go away and I pass a certain amount.          identify the problem, even by pressing        • potentially high infection markers,
Sometimes, the tightness and headache         on my stomach, another hospital did           known as Crp, in blood tests
feelings are present even though I have       a Ct scan and found a burst appendix          • unexpected diarrhoea and
passed quite well. I’d really like to know    that had gone on to form an abscess           an increase in utis
if other people have experienced this         in my back. this was drained under            • a slight sense of ‘not quite feeling
difficulty of passing urine when sitting        ultrasound but the now-empty                  yourself’, low blood pressure and
up, and if they have managed to find           appendix was not removed, as this             possibly low blood salt.
any ways to prevent it. If I was C6,          was deemed likely to cause more
I would be able to lift myself off the         problems than it would solve.                 it seems that the only reliable way of
seat when I’m passing. Obviously this             Much treatment, lots of drugs and         identifying a problem is by Ct scan.
is not an option with my level of SCI.        numerous complications followed               if you feel unwell, but are unsure why,
     I would be really grateful for any       and all told, it required more than three     mention it to your gp. a scan is also a
advice from other SCI people who              months in hospital to sort it out. even       good way of checking for other things
have experienced similar problems.            now, the ramifications of the original         and early identification and treatment
Eugene Callan C4 incomplete                   appendicitis, including very variable         of a problem is always best.
Email ecallan@eircom.net                      blood pressure and muscle stiffness,           Peter Henry C5/6

  editorial & Advertising Breda Duggan l tel 0845 678 6633 ext 217 l email b.duggan@spinal.co.uk l
  next copy date 1 july 2014 l Published by spinal injuries association, sia house, 2 trueman place, oldbrook, Milton Keynes MK6 2hh l
  Fax 0845 070 6911 l email sia@spinal.co.uk l Freephone advice Line 0800 980 0501 Mon-Fri 9.30am to 4.30pm l
  text messaging text sia and your enquiry to 81025 messages will be charged at your standard network rate l
  registered Charity no 1054097 Chief executive Officer paul smith l Design & print tu ink www.tuink.co.uk

4 l forward thinking l MAILBOx                                                                                                           June 2014
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Employers’ Network (SPAEN),                      and expense can be minimised.
Response to                              which provides advice and support                    SPAEN, which has over 500
                                         to the PA employer.                              members, says that Employment
The Contrarian                               Mr Nabi adds that being a PA                 Tribunal cases are few and far
                                         employer, “…fundamentally changes                between, while LCIL reports
Perspective                              the relationship between the client              approximately five to six cases in
                                         and the PA.” I fully agree with him              the last 10 years. Mr Nabi mentions
I am disappointed that forward           on this point. Being a PA employer               the lack of quality control and
magazine did not have a contrary         changes an individual from being                 scrutiny provided by the Care Quality
response to the article The Contrarian   the passive recipient of their                   Commission, adding that we don’t
Perspective by Ejaz M Nabi, Chief        care/support to someone who is                   want another Panorama exposé
Executive, Active Assistance. As         in full control of the assistance they           or another ‘Mid Staffs’. Were those
Mr Nabi represents a care agency         want – when, where, how and by                   involved in these not subject to
perhaps we should not be too             whom they choose.                                quality control and scrutiny by
surprised by his views, but surely           The article continues with Mr                relevant authorities? Those receiving
this piece warranted a response          Nabi talking about the risks PA                  a Personal Health Budget or a
from someone who welcomes the            employers and their PAs face,                    Direct Payment should have their
opportunities for choice, control        which have the potential to go                   care/support packages regularly
and freedom that Personal Health         to an Employment Tribunal. PA                    reviewed by their local health
Budgets give. Whilst I accept his        employers can take out a Full                    authority or local authority.
concerns around budgetary                Cover Independent Living Insurance               These reviews should identify any
constraints, I felt that the main        policy and should always have                    problems that occur and remedies
body of his commentary presented         employment and public liability                  or safeguards put in place.
the reader with an unbalanced and        insurance. Some insurance                            Of course there will still be a
negative view of being a personal        companies have an enhanced policy,               certain number of people who
assistant (PA) employer.                 which gives access to employment                 abuse the system, however few
    Therefore, as a PA employer for      law specialists who can give advice              and far between, but these instances
over 14 years and as Chair of Lothian    on managing employees, therefore                 should not be used as a barrier to
Centre for Inclusive Living (LCIL), a    minimising the risk of legal disputes            people wishing to assert their right
disabled people’s organisation that      from mishandling disciplinary                    to choice, control, freedom and
provides support to PA employers         matters. Before a PA or their                    dignity in the way they have their
in Edinburgh and the Lothians, I am      employer can take anyone to a                    care or support delivered.
writing in the hope that I can redress   tribunal they must follow a process of           Jeff Adamson
this imbalance by addressing some        arbitration, which means that people             Chair, Lothian Centre for Inclusive
of the points Mr Nabi made, to give      are better protected and any stress              Living and SIA member
readers a view from the ‘other side
of the fence’.
    In his article Mr Nabi asks, “…
does the client really want to become       It would seem that Scotland is well ahead of the rest of the UK in making
an employer with all the associated         real choice for recipients of social care a reality.
responsibilities…?” Of course, being            the social Care (self Directed support) (scotland) act 2013 came into
a PA employer is not for everyone           force in april 2014.
and no one should be forced into                the act requires councils to offer people a range of options for how their
taking on this role, but most areas         social care is delivered, to give people more choice and flexibility over their
in Great Britain have support               social care and enable them to choose services to suit/improve their life.
organisations to help with the              there are four ways people will be able to direct and receive their support:
responsibilities that come with             1 a direct payment – you will be given your individual budget to make
being an employer. For example,                 your own arrangements. you can do this with or without assistance.
LCIL provides PA employers with             2 Choose a care or support organisation and the council will arrange it.
assistance in recruitment, training             you then work with the care or support organisation to plan your support.
(for the employer and the PA),              3 the council holds your budget and arranges your service. your support
terms and conditions of                         will be arranged by your care manager who will have talked with you
employment, payroll, as well as                 about your wishes and preferences.
advising the employer of their              4 a mix of the above.
rights and the rights of the people         You can find out more about this at www.selfdirectedsupportscotland.gov.uk
they employ. LCIL also facilitates
a PA employers’ peer support group,
which gives employers the chance
to discuss any problems they have.       The views and opinions expressed in forward are not necessarily those of
There is also an organisation in         the spinal injuries association. we reserve the right to edit letters sent for publication.
Scotland, Scottish Personal Assistants   the deadline for receiving contributions for the august issue is 1 july 2014.

www.spinal.co.uk                                                                               MAILBOx l forward thinking l 5
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Q&A
You ask us...

                                               Disablement allowance (sDa),                travellers, national express has a
                                               registered as having a visual impairment,   Disabled persons travel helpline,
                                               registered as deaf or use a hearing aid     staffed from 8am – 8pm (7-days-a-
        Can I apply for a free                 or have epilepsy. once you are in receipt   week) to give information on times,
Q       bus pass?
       yes, you can. you can get a bus pass
                                               of a Disabled persons railcard, you
                                               and an adult companion will be
                                                                                           destinations and assistance.
                                                                                           For more information call 08717 818179
A      for free travel if you’re disabled.
passes from councils in england can be
                                               entitled to a third off most rail fares
                                               across Britain. the Disabled persons
                                                                                           or visit www.nationalexpress.com
                                                                                           and follow the links to coach travel
used anywhere in england and wales:            railcard costs £20 for one year and         for disabled people.
• at any time on a saturday, sunday            £54 for three years.
or bank holiday                                For more information and for                      Due to the level of my injury,
• from 9.30am – 11pm on any other day
     Contact your local council to find out
                                               railcard offers/discounts please visit
                                               www.disabledpersons-railcard.co.uk
                                                                                           Q     I will need to get around using a
                                                                                           Wheelchair Accessible Vehicle (WAV).
who issues the disabled person’s bus                                                       As I am unable to afford to purchase
passes in your area, as part of the                  I am going on my first holiday         a new vehicle, do you know where
english national Concessionary travel
scheme. you’re eligible for a pass if you
                                               Q     since I sustained my spinal cord
                                               injury. Can you give me any advice
                                                                                           I can buy a used WAV?
                                                                                                 yes, there are many suppliers of
live in england and are ‘eligible disabled’.
For more information and how to
                                               or guidance?
                                                     sia has produced a factsheet
                                                                                           A     second-hand wheelchair accessible
                                                                                           Vehicles and here are a few to try:
apply to your local council for a bus
pass, please visit www.gov.uk/transport-
                                               A     entitled holiday procedures,
                                               which covers what to consider from the
                                                                                           jubilee automotive
                                                                                           Tel: 0121 502 2252
disabled/cars-buses-and-coaches                moment you decide on your destination       www.jubileemobility.co.uk
                                               to returning home. Call the advice Line     gM Coachwork
      Can you give me any                      on 0800 980 0501 to obtain a copy.          Tel: 0845 850 1860
Q     information on the Disabled
Persons Railcard?                                   I am visiting friends and
                                                                                           www.gmcoachwork.co.uk
                                                                                           Mobility nationwide

A     to qualify for a Disabled persons
      railcard, you must be in receipt
                                               Q    don’t want to travel by train.
                                               Does National Express have
                                                                                           Tel: 01824 707773
                                                                                           www.wheelchairaccessiblevehicles.com
of one of the following: Disability            wheelchair accessible coaches?              allied Mobility
Living allowance, personal independence            yes, they do. Besides having a          Tel: 0808 231 9354
payment, attendance allowance, severe          A   Code of practice for Disabled           www.alliedmobility.com

      After watching the TV series                  there are quite a few companies that hire narrow boats whether you
Q     with Timothy West regarding
canal boat journeys, can you advise
                                               A    want to steer yourself or have a pilot provided. here are some details:
                                               the Bruce trust: www.brucetrust.org.uk
me of where I can hire a wheelchair            Disabled afloat riverboats trust: www.glosdart.co.uk
accessible narrow boat?                        accessible Boating: www.accessibleboating.org.uk
                                               Canalability: www.canalboat.org.uk
                                               Bruce wake trust: www.brucewaketrust.co.uk

6 l forward thinking l Q&A                                                                                                    June 2014
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
pleased to meet you...
                                                                        grabbed a backpack and set off to Australia and
                    Breda Duggan                                        New Zealand. I travelled for longer than intended
                    publications Manager                                but I knew it was an opportunity I probably
                                                                        wouldn’t get again!
                    I started my career in healthcare communications,       I’m excited to have joined SIA and I’m looking
                    organising medical events for pharmaceutical        forward to meeting and working with the many
                    clients. I learnt about different therapy areas      SCI people and healthcare professtionals who
                    including oncology and cardiology.                  contribute regularly to forward and to SIA’s other
                         After several years working in London I        areas of work.

                                                                           I’m excited to be working at SIA and I am
                    Amanda Giles                                        looking forward to meeting our fantastic
                    Community Fundraising Officer                         supporters and assisting with all of their
                                                                        fundraising projects. It’s a real privilege to
                    My background is in the retail sector, where        work with such a dedicated team of staff.
                    I have worked with, and managed a variety of           I try to attend at least three music festivals
                    paid and volunteer teams. I have experience         a year. I’m also a bit of a reader and generally
                    of putting on events such as celebrity book         have a couple of books on the go at any
                    signings, product launches and workshops.           one time.

                                                                        and gained a BSc in Library and Information
                    Sandra White                                        Studies from the University of Wales, as a part-
                    Education and Training Assistant                    time distance learner in 2010.
                                                                            I attended the very popular SIA ‘Choosing
                    My background is in the library and information     your Wheelchair’ course held in Sheffield in
                    management sector, where I worked in the            February. It was both informative and inspiring
                    administration of training courses as well as       to meet some of the people that SIA is
                    information provision. I have experience of         committed to helping.
                    working in a large public library, as well as in        I love holidays and travel, and I’m a
                    higher education, private industry and the          fairweather runner. I also enjoy reading and
                    NHS. I enjoy studying and learning new skills,      going to the theatre whenever possible.

                                                                        scholarship to undertake an MA in International
  Lady-Marie Dawson-Malcolm                                             Human Rights law.
                    Regional Support Officer, London South                    I am currently serving as the vice-chair of my
                                                                        borough’s Access Association, where I undertake
                    In January 1992, I became a member of an            access auditing on behalf of the council and
                    exclusive group of individuals after sustaining     advocate on behalf of residents who are
                    a C5/6 complete spinal cord injury due to           members of the Association. I’m also a Disability
                    domestic violence. I spent two days in a District   Equality Consultant for a train operator,
                    General Hospital, after which I was airlifted to    assessing the effectiveness of its disability travel
                    the SCI Centre in Stanmore. My life prior to my     policy and staff diversity awareness.
                    injury was full-on. I worked in numerous jobs           I refuse to let my SCI prevent me from living
                    and was also the Physical Training Instructor       a fulfilled life. My passion is to empower others
                    of the 31st Royal Signals Regiment (V).             like myself to realise that there is life post injury.
                        Suddenly, a new way of life was thrust upon
                    me. Over the past 22 years I have studied four      This post is sponsored by Pannone
                    languages, obtained a law degree and won a          part of Slater & Gordon

8 l in the news l FROM SiA                                                                                            June 2014
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
Update from the SiA
information Services
Training courses offered by the SiA Academy are proving to be
as popular as ever, with new training courses being introduced.                    Website
The Housing and Options: Life and        This has led to the creation of a new     We’ve introduced a new message
work after spinal cord injury courses    Study Day, Managing Spinal Cord           board on the website. You no longer
were held at Stanmore, Middlesbrough     Injury – The Professional Perspective.    need to remember separate log-ins for
and Oswestry, during March and               The first of these study days will     the message board and the website.
April. These were well received, with    be in Birmingham in July 2014 and         If you have a problem finding information
100% of the attendees rating the         will include pain management;             or have any comments on the site
Middlesbrough course as ‘excellent’.     autonomic dysreflexia; spasticity;         please let me know by email.
    Feedback from the Moving and         respiratory care and psychological            Our monthly email bulletin, eclips,
Handling and Bladder and Bowel           issues.                                   features a mixture of SIA news and
Management Study Days has been               To find out about any of the courses   items of general interest. If you haven’t
very good, and helped to identify        and Study Days, visit the Education       already signed up to receive it, go to the
further subjects of interest to people   and Training section on the SIA website   Our Services section on the website.
treating or caring for SCI patients      or contact the Education and Training     Julie Braithwaite
outside of specialist settings.          co-ordinator, Karen Mikalsen.             Head of Information Services

Advice Line                               JOB ADVERTISEMENT
Ray and Joy, our Advice Line Officers,
answer calls on a variety of topics.
However, we do occasionally let them
                                          PEER SUPPORT OFFICER –
go out and about! You may have met
Ray if you visited our stand at Naidex
                                          GREATER LONDON (NORTH)
and Joy was a delegate at the first               is seeking to appoint a Peer Support Officer to join its Outreach
conference held by the Cauda Equina
Syndrome (CES) UK Charity in February.
                                          SIA      Services team, specifically to provide support within the Greater
                                          London area north of the Thames.
She also attends the London meetings
of the Transverse Myelitus Society.       The role of the PSO is to address the needs of newly injured people in
The Advice Line is sponsored by           the London Spinal Cord Injury Centre as well as those in non-specialist
Fentons part of Slater & Gordon           healthcare settings, working primarily within Major Trauma Centres,
                                          District General Hospitals and domiciliary settings so as to offer support
Advice Line volunteers                    to them and their families. Other key aspects of the role involve delivering
                                          in-service training and participating in study days organised for healthcare
We would like to recruit volunteers       professionals. The postholder will be spinal cord injured, have excellent
to assist our Advice Line Officers. This    communication skills and the ability to build strong relationships with
will include contacting companies         key stakeholders. A willingness to travel is essential. Previous experience
and other charities for their details,    in a support or information giving role would also be advantageous.
updating information sheets,
photocopying and other administrative     The post is full-time (35 hours per week) and is offered on a three year
tasks. We are looking for people who      fixed-term contract at a salary of £24,387 per annum plus 28 days
are confident on the phone and have        leave and access to group life assurance and pension scheme.
basic IT skills. Ideally you will live    Visit www.spinal.co.uk to download a job information pack
within twenty miles of Milton Keynes      or email c.pinches@spinal.co.uk
and be available at least once a week.
Travel expenses will be provided.         Closing date for completed applications: Friday 27 June
For further information visit our         interviews will be held at the SiA Office on Monday 7 July
website or contact Julie by email
j.braithwaite@spinal.co.uk

www.spinal.co.uk                                                                            FROM SiA l in the news l 9
Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
News from our                                                                                Outreach Team
                                                                                             The Outreach team provides much-

Outreach Services                                                                            needed support for newly injured people
                                                                                             and family members within SCI Centres,
                                                                                             Major Trauma Centres, District General
                                                                                             Hospitals and other non-specialist
Vocational Support Service                                                                   settings. During the coming months the
SiA’s Vocational Support clinics are now held at most SCiCs and are supported                team will be increasing the amount of
by Occupational Therapy departments as well as the National Careers                          face-to-face support it provides post-
Service in order to offer a multi-disciplinary approach to vocational support.                discharge, offering continued support
Delivered by our peer Support Officers, the clinics provide SCi people with                    to service users.
the opportunity to discuss their options for returning to work, volunteering                     If you have been recently discharged
or re-training and are open to both inpatients and outpatients. So if you’re                 and think you would benefit from
thinking about your future and would like to get some helpful advice, why not                speaking with a member of our Outreach
take the time to pop along to one of the clinics for an informal chat. Below is              team then please contact the SIA office.
the schedule of clinics taking place at SCiCs over the next few months:                          Our regional Peer Support Officers
                                                                                                                  are also involved
pinderfields SCi Centre 20 August                                                            Outreach team         in the delivery of
Southport SCi Centre 20 August                                                                                    in-service training
Sheffield SCi Centre July                                                                                           for healthcare
Oswestry SCi Centre 1 August                                                                                      professionals and
Stoke Mandeville SCi Centre                                                                                       they chair the SCI
24 June, 29 July, 19 August                                                                                       Study Days that take
Stanmore SCi Centre 16 June, 28 July                                                                              place up and down
Salisbury SCi Centre 24 June                                                                                      the country. For
                                                                                                                  more details about
The clinics are underpinned by our                                                                                our Study Days
‘Options: life and work after SCI’ training                                                                       please visit the
course, which also takes place within                                                                             SIA website or
many of the SCICs and is open to SCI          placements. The scheme requires SIA            speak to Karen Mikalsen at the SIA office.
people and family members. The course         to bring on board a national employer              The team was involved in plans for
is free to attend and details of the          who would be able to offer a range of           the recent launch of our new service
programme and how to book are                 work experience opportunities. The             SIA Healthcare, to which the majority
available via the SIA website.                exciting news is that Network Rail, new        have already signed up. They will be
     Plans are currently in hand to develop   co-funders of the Vocational Support           supporting a variety of events taking
and launch a new Work Placement               service, are very keen to support this         place in 2014, as part of SIA’s 40th
scheme for SCI people. Initial discussions    initiative. Initial talks with Network Rail    Anniversary celebrations, including
have already taken place with the             have proved incredibly positive so we          Fish & Chip suppers being held at
Pertemps People Development Group,            hope to be able to bring you further           SCI Centres around the country.
who can provide employability skills          news about the Work Placement                  Jamie Rhind C5/6, Simon Pinnell T7
training and work experience                  scheme in the next issue.                      SIA Outreach Services Managers

10 l in the news l FROM SiA                                                                                                  June 2014
Leading the way
for SiA Healthcare
Over the past few months the SiA Healthcare team has been working                                   In April 1998 I underwent aortic
hard, talking to people about the benefits of joining and discussing                            surgery – unfortunately there were a
any fears that they might have about switching to a new service...                             number of complications which, as a
                                                                                               result, left me paralysed at T10/12.
      e thought it was time that you
W     got to know the team a bit better
so we spoke to Pete Hutchings and
                                                                                               I struggled at first to get my head around
                                                                                               things but with the support of my family,
                                                                                               close friends and especially my partner
Stephen Burns, our new SIA Healthcare                                                          I slowly started to adjust. I worked hard
Outreach Relationship Managers. Here                                                           during my therapy sessions and steadily
they tell us a bit about themselves,                                                           started gaining my independence.
their own experience since making the                                                               The support and advice that I received
switch to SIA Healthcare and how they                                                          from my peers was also invaluable and
are supporting others across the UK.                                                           I am delighted to be able to offer
                                               Manager a large part of my work involves        similar support in my role as Outreach
Stephen Burns                                  supporting newly injured people in many
                                               areas, and most specifically with the
                                                                                               Relationship Manager for SIA Healthcare.
                                                                                                    The Spinal Injuries Association has
Outreach Relationship Manager                  effective management of, and the crucial         been providing SCI people and their
                                               impact of, bladder and bowel conditions.        families with support and advice for
                         My name is            I know first-hand how important this             40 years, and throughout this time has
                         Stephen Burns and     support and advice can be! I also actively      continually reviewed and developed their
                         I am an Outreach      support healthcare professionals across         service provision, ensuring it is modern,
                         Relationship          the UK as our relationship with                 relevant and truly reflects the needs of
                         Manager for SIA       healthcare professionals within SCI             SCI people. Recently these services have
                         Healthcare. I am an   Centres and District General Hospitals is       been enhanced further with the launch
                         established, long-    a vital link in the provision of our support.   of SIA Healthcare.
                         term wheelchair                                                            Being able to talk to people who
                         user, having been                                                     understand about the real, and
a paraplegic for nearly 30 years. I have       pete Hutchings                                  sometimes sensitive, issues of bowel
worked within the continence industry          Outreach Relationship Manager                   and bladder management has been
for 18 years and have built extensive                                                          invaluable throughout the past 30 years.
experience working within SCI Centres                                  My name is Pete         I have been humbled, and very fortunate
and supporting SCI people.                                             Hutchings and I         to work alongside and support some
    From my own experience, the first                                   am an Outreach          remarkable people over the years and
18 months after injury were particularly                               Relationship            I am looking forward to continuing this
difficult especially in terms of managing                                manager for SIA         in my role as Outreach Relationship
my bladder and bowel. At the time there                                Healthcare. Here        Manager for SIA Healthcare.
was limited help and support and I am                                  is a little bit of      Find out more at www.spinal.co.uk
delighted to see that this has improved                                my story…               Telephone 0800 023 8841
dramatically.
    Most recently these services have
been enhanced further with SIA
launching SIA Healthcare – a dedicated
home delivery service that will provide
                                                  Save the date
SCI people with all of their urology and          SIA will be holding its 40th Anniversary AGM on Thursday
stoma appliances and prescription                 16 October 2014 at the Williams Conference Centre in
medication, delivering it discreetly to           Oxfordshire. To celebrate this milestone in our history, we are
their door. I am delighted to be part             pleased to announce that we will be combining the AGM with
of this new, innovative service. It is so         a conference devoted to the subject of technology, which will
simple and if it can help to make even            complement the prestigious venue kindly donated to us by Williams.
one individual’s life easier that is a            Full details of the day’s programme will be published in the August
good day at the office for me!                      edition of forward and will also be made available on the SIA website.
    In my role as Outreach Relationship

SIA Healthcare 0800 023 8841                                                                   SiA HEALTHCARE l in the news l 11
reb
                                                                                                                     uild
                                                                                                                          in
                      Award                                                                                                          g liv
                                                                                                                                          es
                      nominations
CATEGORy              SHORTLiST

Outstanding           Anna Turney          “Anna shows great determination, courage and commitment. Her inspiration goes beyond
Sports Achievement                         her sporting achievements; as a motivational speaker she cascades her enthusiasm and
                                           determination to others.”
                      peter Finbow         “Peter is a great ambassador for sport as rehabilitation. He has played a big part in finding
                                           and guiding many SCI basketball players to great sporting achievements.”
                      Liz McTurnan         “Liz embodies the spirit of ‘sports for all’. She regularly and willingly gives her time to
                                           inspiring others to get involved in sport, whatever their age and ability.”
Armed Forces          Lee Cairns           “Lee has been a constant supporter, advocate and resource to DMRC Headley Court.
Achievement                                He loves his job and is consistently available to help anyone who needs him.”
                      Kevin Ogilvie        “Kevin’s courage and determination has been inspiring. He takes everything in his stride
                                           and now goes out of his way to provide help and information to others with SCI.”
                      Sean Allerton        “Sean is a fantastic ambassador for the SCI military community. His exploits and drive
                                           to live life to the full have inspired other SCI Servicemen with whom he comes into contact.”
inspirational         Nic Kane             “Nic’s bubbly character and positive outlook means he is a fantastic role model. He regularly
Achievement for                            raises awareness of SCI by speaking to local press or on behalf of SIA in his local area.”
young people          Toby Sweeny-Croft “Toby never lets anything hold him back and his determination inspires other SCI people
                                        he comes into contact with.”
                      Michael Cattemole “Michael’s courage, determination and positivity are infectious. He is an inspiration to peers
                                        and professionals alike through his outlook and assistance in developing eye-gaze products.”
inspirational         paul Bush            “Paul has constantly supported and fundraised for SIA, and raises awareness of SCI and
Achievement                                access issues in his local area.”
for Adults
                      Lucy Robinson        “Lucy dedicates much of her spare time to improving the lives of SCI people by supporting
                                           and encouraging others to achieve new goals “
                      Matt King            “Matt’s strength of character amazes and inspires. He is passionate about supporting
                                           others by fundraising and raising awareness of spinal cord injury.”
SiA Community Star    Tracy Hartley        “Tracy has unreservedly given her time and efforts raising funds for and awareness of SCI.
                                           Her approach to involving as many people as possible is heart-warming.”
                      Bill Wright          “Bill is a real “unsung hero”. His support and commitment to SIA is invaluable.”
                      Clare Folkes         “Clare is not only a great young carer but is also a keen SIA fundraiser too.”
inspirational Carer   Andrew Uttridge      “Andy is a gentleman and is absolutely committed to supporting his wife and the
                                           SCI Community.”
                      Angela Cavill-Burch “Angela not only dedicates her life to supporting her husband, but also uses social media
                                          to actively campaign for better care for SCI people.”
                      Jo Woodward          “Jo is a true ‘rock’ and ‘unsung hero’. She has been such a help to her partner, and others
                                           in the spinal centre too.”
Liz Martin Award      Dr Jan Gawronski     “Dr Gawronski goes that extra mile when it comes to promoting and developing the
for Acheivement                            services offered in SCI Centres. His work has benefited both the NHS, and most important
                                           of all, SCI patients on ventilation.”
                      Dr John Watt         “During his 30 years at Southport SCI Centre, Dr Watt was passionate about getting high-
                                           level SCI ventilator-using patients discharged, back home and into community settings.”
                      Tony Ward            “Tony is a well-respected, approachable and knowledgeable professional whose care for
                                           patients, family and staff is admirable.”
Outstanding Nurse     Debbie Green         “Debbie insists on the highest level of care from all of her staff and to this end she has kept
                                           in contact with many of the patients she nursed and takes great pleasure in finding out
                                           how individuals have progressed.”
                      paul Harrison        “Paul has been helping SCI people for over 20 years. He has helped train hundreds of health
                                           care professionals. He pushes the boundaries of best practice and is always willing to help.”
                      Alison Lamb          “Alison is a champion for SCI peoples’ care and always goes that extra mile to help SCI
                                           people, and their families. “

12 l in the news l AWARD NOMiNATiONS                                                                                                June 2014
The committee met on 26 March 2014 in London to draw up the shortlist from
                                              the many nominations received for this year’s Awards. Nominees were scored

                    j ur y                    anonymously from information given on the nomination form. The scores
after spinal cord in                          have determined the names on the shortlist below and will also determine
                                              the winners. The results will be announced at a special event to be held in
                                              Birmingham on 5 June, hosted by actor Stephen Mangan.

  Outstanding            Andrew Galbraith “Andrew’s drive, commitment and enthusiasm ensure that all SCI people have the
  physiotherapy                           opportunity to maximise their rehabilitation.”
                         Joanne Hathaway “Joanne works hard to ensure SCI people get the treatment they need, and staff are
                                         well trained and supported.”
                         Jane Weston          “Jane always puts patients first. She has dedicated her life to rehab for SCI people.”
  Outstanding            Michelle Clarke      “Michelle is compassionate and caring and always puts the patients’ needs first.”
  Occupational
                         Des Buckley          “Des’ work has created a much-needed support mechanism for SCI Service personnel.”
  Therapist
                         Ruth peachment       “Ruth is caring and considerate. She has worked tirelessly to improve the quality of life
                                              of SCI people.”
  Outstanding            Lorraine Hedgecock “Lorraine is always happy, motivated and enthusiastic. Our Physiotherapy team would
  Healthcare Assistant                      not be the same without her.”
                         Helen Gillian        “Helen is proactive and passionate. She really does make a difference to peoples’
                                              rehab experience.”
                         Alison Day           “The care of SCI people is central to Alison’s life and she goes above and beyond to ensure
                                              patients get the best care.”
  Outstanding            prof Wagi El Masry “Professor El Masry is a major voice for SCI all over the world. He dedicates so much time
  Consultant                                to improving the quality of life of SCI people.”
                         Dr Allison Graham “Dr Graham makes a difference to the SCI Community in so many ways, including
                                           researching evidence and information on patient care to inspire her team.”
                         Rhodri phillips      “Lt Col Phillips leads by example. He dedicates hours to helping SCI people, and makes
                                              every effort to ensure staff and patients feel valued and supported.”
  Outstanding            Sarah Hinsley        “Sarah is passionate about SCI. She is an outstanding Case Manager and rises to every
  Case Manager                                challenge put in front of her.”
                         Jennifer Whitthall “Jennifer is passionate and committed about supporting SCI people and their families.
                                            She is a real unsung hero.”
                         Glynis Kenny         “Glynis is a shining light for case management. She makes a huge difference to SCI peoples’
                                              lives and always respects advice from Therapists.”
  Outstanding            Helen Smith          “Helen is a great support to SCI people and a keen advocate of SIA’s services.”
  psychologist           paul Kennedy         “Paul has made a difference to the SCI community through his work at NSIC.
                                              He is inspirational and leads with enthusiasm.”
                         Dr Clive Glass       “Dr Glass has dedicated 30 years to supporting SCI people. He has been instrumental
                                              in changing work practices and will be sorely missed when he retires this year.”
  Outstanding Team       Dr Allison Graham Children and Young People Department NSIC
                                           “The development of this specialist team was groundbreaking. They recognise that
                                           children and young people have their own needs and work well with the patients’ families.”
                         Sophie Newsrski      Stanmore Spinal Outreach Team
                                              “This team covers a vast geographical area. They are a multi-disciplinary team whose
                                              support is invaluable.”
                         imelda Weir          Southport Outreach Team
                                              “This team is full of energy and ideas which ensure the transition from hospital to home
                                              is a positive experience. There is nothing that is too much trouble for them.”
  Excellence             Alex Brown           “Alex really cares about all his clients. He has the upmost respect for them and goes that
  in Legal Care                               extra mile to help make their lives easier.”
                         Warren Collins       “Warren has excellent experience and skills in supporting SCI people and he genuinely
                                              cares about the people he represents.”
                         Gerard McDermott “Gerard has a highly successfully career supporting SCI people and is a true advocate for
                                          SIA’s services.”

   www.spinal.co.uk                                                                   AWARD NOMiNATiONS l in the news l 13
Introduction of
personal independence payment
personal independence payment launched in April 2013 and
will eventually replace Disability Living Allowance. SiA looks
at the key components of the new payment and what you will
need to do when making your claim.

    eople who receive DLA have recently      term health condition or disability (like    explaining what will happen to your
P   been sent a letter by the Department
of Work and Pensions (DWP), explaining
                                             an SCI) and claimants will be assessed
                                             on their ability to complete a number
                                                                                          DLA and how to claim PIP.
                                                                                              To start a claim for PIP, you will need
how DLA is to be replaced by Personal        of key everyday activities.                  to telephone the DWP during which
Independence Payment (PIP).                      A phased approach has been taken to      you will be asked a series of questions
     PIP is a new disability benefit for      the introduction of PIP and new claimants    to verify your identity and to give you
people aged between 16 and 65, which         have been applying since June 2013.          the opportunity to tell DWP about your
will be gradually rolled out between                                                      health condition or disability, and how
2013 and 2018.                               Switching to pip                             it affects your daily living.
     PIP will have two components: a daily   DWP is also using a phased approach              Once the DWP has established
living component for help participating in   when moving DLA recipients over to           that you have met basic entitlement
everyday life and a mobility component       the new PIP, with recipients in some         conditions, a form called ‘How your
for help with getting around. Each           parts of the country being approached        disability affects you’ and an information
component is paid at two different levels:    now. Recipients who were given DLA for       booklet will be sent to you by post. The
a standard rate and an enhanced rate.        a short period of time (short award) and     form is to enable you to describe exactly
     To claim PIP you must have a long-      those who notified the DWP that their         how your health condition or disability
                                                                     disability or        affects your daily life, on both good and
                                                                     circumstances        bad days and over a range of activities.
                                                                     have changed,            Most people will then be asked to
                                                                     will be              attend a face-to-face consultation with
                                                                     contacted in the     a health professional as part of the
                                                                     coming months,       assessment process, which could
                                                                     if they haven’t      take place in your home if required.
                                                                     been contacted           Next, you will receive a letter giving
                                                                     already, to move     the DWP’s decision regarding your
                                                                     them across to       claim together with a clear explanation
                                                                     the new PIP.         of how that decision has been reached
                                                                          Everyone        and how the evidence you gave has
                                                                     who has been         informed that decision.
                                                                     awarded DLA
                                                                     indefinitely will     Further information
                                                                     be contacted         If you are not happy with the decision
                                                                     by the DWP           you will have the right to appeal and
                                                                     between              the process should be explained in
                                                                     October 2015         the information booklet.
                                                                     and 2018,                To help our members understand PIP
                                                                     informing them       and the assessment and appeal process,
                                                                     that their DLA is    SIA has produced an in-depth factsheet
                                                                     due to end and       which is available to download online
                                                                     explaining how       on the SIA website www.spinal.co.uk or
                                                                     to apply for the     you can request a paper copy by calling
                                                                     new PIP. At some     SIA House.
                                                                     point after 2015,                    Mick Hutchins C4/5
                                                                     depending how                        Public Affairs Officer
                                                                     the intended
                                                                     roll-out is going,
                                                                     you will be sent
                                                                     a letter

14 l in the news l pUBLiC AFFAiRS                                                                                           June 2014
Personal Independence Payment
and Motability
When the Government announced that the Disability Living Allowance                        customers who leased a Wheelchair
(DLA) was to be scrapped and replaced by the new personal independence                    Accessible Vehicle (WAV), to assist them
payment (pip), DLA recipients feared the worst. Will i be entitled to the                 with their future mobility arrangements
new pip? What will happen to my Motability car or powered chair?                          including, where appropriate, helping
                                                                                          them to purchase their current vehicle.
      e cannot guarantee that everyone       off package of transitional support to            For customers with adaptations to
W     on DLA will automatically qualify
for the new PIP, but those wholly reliant
                                             those customers who can no longer use
                                             the Scheme as a result of not being
                                                                                          their vehicle, the Scheme will help them
                                                                                          with the cost of fitting the same
on a wheelchair should still meet the        awarded the Enhanced Rate of                 adaptations to a non-scheme vehicle.
requirements for the Mobility Component.     the Mobility Component of PIP.                   For those leasing a powered
The SIA Advice Line staff can provide                                                      wheelchair or scooter, the Scheme will
you with the relevant information and               What is this transitional             provide support and advice, with the
advise you on how to complete the
application form (PIP1).
                                             Q      support package?
                                                    With regards to cars (including
                                                                                          objective of enabling them to purchase
                                                                                          their current product.
    The Motability Scheme will work
with the new PIP, in the same way as it
                                             A      Wheelchair Accessible Vehicles),
                                             the DWP will allow DLA payments to                   Can I keep the Motability vehicle
does for DLA, to those who receive any
of the following:
                                             continue for four weeks after they make
                                             their decision regarding PIP. Motability
                                                                                          Q       if I am not awarded the Enhanced
                                                                                          Rate of the Mobility Component of PIP
• The Higher Rate Mobility                   will also allow customers to keep their      but I am challenging the decision?
Component of DLA                             vehicle for up to three weeks after the             Customers will be able to challenge
• The Enhanced Rate of the
Mobility Component of PIP
                                             DLA payments stop.
                                                  For customers returning their car in
                                                                                          A      the decision if they disagree with
                                                                                          the DWP, initially by asking the DWP to
• The War Pensioners’ Mobility               good condition and within the agreed         reconsider their decision and then by
Supplement                                   time frame, the Scheme will, subject to      appealing to HM Courts and Tribunal
• The Armed Forces                           terms and conditions, provide the            Service. However, the DWP will not
Independence Payment                         following transitional support:              continue to make DLA payments while
                                             • For those who entered into their first      a decision is being challenged and
Some common concerns are:                    leasing agreement under the Motability       Motability will not be able to leave the
      What happens if I am awarded           Scheme before January 2013 and who           vehicle with the customer.
Q     the Enhanced Rate of the Mobility
Component of PIP?
                                             would not have been aware of PIP and
                                             its possible impact when they joined,
                                                                                              If the challenge is successful and
                                                                                          they have been awarded the Enhanced
     If you have been awarded the            Motability will provide transitional         Rate of the Mobility Component of PIP,
A    Enhanced Rate of the Mobility
Component of PIP, you should not
                                             support of £2,000.
                                             • For those who joined Motability during
                                                                                          the customer would be eligible to
                                                                                          re-join the Scheme.
experience any disruption to your lease      2013, Motability will provide transitional
as you move from DLA to PIP.                 support of £1,000.                           If you have any concerns regarding
                                                  Customers who have made an              your vehicle, please speak to a
      So, what happens if I am not           Advanced Payment will have the payment       Motability Customer Services Adviser
Q     awarded the Enhanced Rate of
the Mobility Component of PIP?
                                             refunded on a pro-rata basis. No costs
                                             will be passed on to customers whose
                                                                                          on 0300 456 4566.

     Unfortunately, existing recipients      lease ends early as a result of the PIP.     If you leave the Motability Scheme
A    of the Higher Rate of the Mobility
Component of DLA, who are not awarded
                                                  Motability will offer customers an
                                             opportunity to buy their vehicle following
                                                                                          completely and need advice in looking
                                                                                          for another car or other options,
the Enhanced Rate of the Mobility            the end of their lease. The payments that    Motability has published a booklet
Component of PIP, will not be eligible       would otherwise have been received           entitled Staying mobile after Motability.
to use the Motability Scheme.                upon returning the vehicle can be            To receive a copy, call Motability’s
                                             directed towards the purchase price.         Customer Service line, as above,
      Will Motability offer any help               Motability will work with their                        or download a copy
Q     if I am no longer eligible?
     Motability is aware of the difficulties
                                             suppliers, including RSA Insurance and
                                             the RAC, to provide general information
                                                                                                         from their website:
                                                                                                         www.motability.co.uk
A    customers face when having to
leave the Motability Scheme. Therefore,
                                             on motoring, insurance and other
                                             services outside the Scheme.                                Ray Cross
Motability has decided to provide a one-          Motability will also work with                         SIA Advice Line Officer

SIA Healthcare 0800 023 8841                                                              pUBLiC AFFAiRS l in the news l 15
action groups have been set up. SIA has
NHS Wheelchair Services                                                                signed up to participate in a working
                                                                                       group, Better Assessments, and we
                                                                                       would like to hear your experiences of
NHS England is currently reviewing NHS Wheelchair Services in                          the NHS Wheelchair Services, especially
partnership with service users and their representative organisations.                 your experiences of getting the right
The review will be focussing on six agreed priority areas:                             wheelchair to meet your needs on
                                                                                       hospital discharge.
1 Better assessments                      4 Better training for staff                   If you have any recent experiences,
2 Better informed and empowered           5 Better integration of health and           both good and bad, that you wish to
  service users                             social care, including funding             pass on to us so we can feed them into
3 Better commissioning and                6 Better use of innovation                   the review process, please contact
  procurement, including delivery                                                      Mick Hutchins, SIA Public Affairs
  and repairs service                     In order to tackle each priority area, six   Officer at m.hutchins@spinal.co.uk

SIA Continuing Healthcare Discharge Workshop
  n May 2014, SIA held the third              Delivery of NHS CHC is the               cushions etc.
I Spinal Cord Injury Centre Discharge
Workshop. This series of workshops
                                          responsibility of NHS England’s Long-
                                          Term Conditions Directorate, and we
                                                                                           Feedback from NHS England and
                                                                                       the discharge teams has been very
was organised following an SIA            were therefore delighted to welcome          positive and the workshop identified
survey of the SCI Centre experiences      Sue Swientozielskyj (NHS England’s           a number of possible opportunities
in achieving NHS Continuing               Lead on Long-Term Conditions) and            for us to work together with Sue
Healthcare (NHS CHC) eligibility and      Trish O’Gorman (Programme Director           and Trish to improve NHS CHC
funding, for newly injured patients       for NHS Continuing Healthcare) to            delivery across England.
at discharge. The survey revealed         our most recent workshop. This was               SIA would like to thank everyone
marked differences in outcomes             a unique opportunity for                     who participated. We hope that this
across the different centres, which        representatives from all nine of the         workshop will provide a platform for
often resulted in delays in patient       SCI Centres in England and Wales             enabling the discharge teams to put
discharge. It also revealed concerns      to meet face-to-face with the key            the right packages of care in place for
that after being discharged, patients     individuals in NHS England, with             their patients when they are ready
were, and still are, having their         responsibility for this crucial element      to leave the SCI Centre and begin
packages of care reduced or eligibility   of discharge planning.                       to rebuild their independent lives
for NHS CHC withdrawn on review.              A round-table discussion was             back in the community.
    So the purpose of the workshop        held and centred around: common
was to provide a forum for the            problems with assessments,
discharge teams from the different         differences in assessment processes,                        Mandy Jamieson
centres to share their experiences,       delayed discharge as a result of the                       Continuing
identify common issues and develop        assessment process, safe discharge                         Healthcare
models of best practice to enable         packages, ventilated patients,                             Support Officer
consistent outcomes for patients          interim care home placements and
across the country.                       equipment such as wheelchairs,

The SIA Public Affairs Blog                                                                           Brian O’Shea C4/5
For a different slant on all things related to Public Affairs, why not view our                        Continuing Healthcare
monthly blog on the Campaigning pages of the SIA Website at www.spinal.co.uk                         Adviser

16 l in the news l pUBLiC AFFAiRS                                                                                     June 2014
GETiNVOLVED                                                        Congratulations Virgin London
Raising Funds...                                                   Marathon Team 2014!
                                                                   On Sunday 13 April our fantastic team of runners pounded the streets of
                                                                   London for the 2014 Virgin London Marathon. The team of 22 came together
                                                                                                                     and between them they
                                                                                                                     have already raised a
                                                                                                                     phenomenal £20,000

LAST pLACES                                                                                                          for SIA!
                                                                                                                         We would like to say
                                                                                                                     WELL DONE and THANK
REMAiNiNG FOR                                                                                                        YOU to all those who
                                                                                                                     participated, you have
THE BUpA GREAT                                                                                                       completed an amazing
                                                                                                                     challenge!
NORTH RUN!                                                                                                           To register your interest
                                                                                                                     for a place in 2015, please
Put on your running shoes to change                                                                                  call 0845 071 4350 or email
lives! SIA has secured places in the                                                                                 fundraising@spinal.co.uk
prestigious BUPA Great North Run!
    SIA has places for charitable runners
who are willing to take part and ask
their family, friends and colleagues to
show support by sponsoring them.                                     SPOTLIGHT ON
    Taking part in this event will assist
thousands of people with spinal cord
injury throughout the UK by raising
                                                                     The Henry Smith Charity
funds for much-needed support                                        Over the last six years, SIA’s Regional   only immensely generous but also
services. It will also help SIA campaign                             Peer Support Service has supported        a first for SIA to have the longest-
for better medical and social care for                               hundreds of SCI people                                  running funder of a
SCI people. Your support will help us                                being treated in District                               single project. During
to change lives.                                                     General Hospitals                                       this period, the service
    In turn, you will receive SIA’s full                             across the country. This                                in the South has
support and encouragement. We                                        service was launched in                                 supported over 550 SCI
will assist you with your training and                               2008, with a grant from                                 individuals and family
fundraising, provide priority places in                              The Henry Smith                                         members and provided
other races, give you an SIA running                                 Charity, and enabled                                    support and training
vest and endless enthusiasm.                                         us to reach out to these                                to more than 500
To secure your place in this event,                                  individuals for the first time.            healthcare professionals.
contact Elizabeth Wright at                                               As regular readers of forward
fundraising@spinal.co.uk                                             will know, demand for the service         “I cried with relief when I
or call her on 0845 071 4350                                         quickly grew and we now have a
                                                                     team of ten Regional Peer Support         finally found SIA, they knew
                                                                     Officers working across the country.        exactly how challenging SCI
                                                                     This all started with the support of      could be, and had answers
                                                                     The Henry Smith Charity.
                                                                          We were extremely fortunate          to problems that for years
                                                                     when the Charity decided to renew         I had been struggling with”
                                                                     its funding commitment to the             Katie aged 25,
                                                                     service and has now been a                who was supported
                                                                     supporter for six years. This is not      by Peter Hutchings
                                            Photo: Scott Heppell

                                                                     The support from The Henry Smith Charity has made an impact on
                                                                     hundreds of individuals’ lives and we are very pleased to have this
                                                                     opportunity publically to thank all involved. To find out more about the
                                                                     Charity and the work that they do visit: www.henrysmithcharity.org.uk

18 l in the news l FUNDRAiSiNG                                                                                                                 June 2014
Walking the GB coastline
Raising funds for SiA and for MS National therapy
centres in recognition of the life-changing events that
have affected two of his friends, peter Hill is making
great progress on his trek around the GB coastline.
SiA’s peer Support Officer for the south west,
Graham Anderson, caught up with his old
Newcastle University colleague along the way.

    wenty-six days after he set off from Southampton on a
T   fundraising trek around the mainland GB coastline I met
up with my old university friend, Peter Hill, at Land’s End. The
straight line distance between the two is 231 miles, but Pete’s
coastal route had taken him 427 miles and incredibly he had
climbed more than 85,000 feet. Looking weather-beaten
and considerably lighter than I have ever seen him, Pete
was in good spirits, delighted to be marginally ahead of his
schedule despite a few unavoidable detours due to damage
to the south west coast path from this winter’s fierce storms.
    Meeting Pete at Land’s End neatly illustrates how SIA’s
Peer Support service now reaches all corners of England
and Wales. I am regularly called to support people with SCI
who are rehabilitation inpatients at Marie Therese House,              The North Devon District Hospital in Barnstaple is one
a busy neuro-rehabilitation centre at St Michael’s Hospital,       of six large hospitals in the south west region that I visit
in Hayle, just 17 miles short of Land’s End. The nearest SCI       regularly to meet with consultants, nursing staff and
Centre is in Salisbury, more than 130 miles from Cornwall,         therapists as well as SCI patients. While complex, traumatic
so it is understandable that people living in the south west       spinal cord injuries in the south west are handled by the
peninsula who become SCI, sometimes choose to complete             peninsula’s Major Trauma Centre at Derriford Hospital in
their treatment in District General Hospitals and local            Plymouth, people with non-traumatic spinal cord injuries
rehabilitation centres, rather than spend a lengthy spell          receive treatment in ICU, orthopaedic, stroke, neurology
away from their friends and family. In these cases SIA’s           or oncology wards in the District General Hospitals. A lot
regional Peer Support service is hugely valuable. I am             of my time is used to maintain a wide network of healthcare
sometimes the only other SCI person these people have              professionals who can contact me when an SCI patient
met, and that connection with someone who has gone                 seeks peer support.
through the same life-changing events and who can signpost             Pete carries a GPS tracker provided by Viewranger, so
the way to sources of help and advice is a real lifeline.          I have been following his daily progress since he completed
                                                                   the south west coastal path at the end of March by clicking
investment has opened up more accessible sections                  a link on his website www.gbcoastwalk.com On 19 April
I caught up with Pete again near Barnstaple, to trundle            2014, Pete reached his first 1,000 mile landmark in south
along the wheelchair accessible Tarka Trail with him as he         Wales. With another 4,000 miles to go around the GB
circumnavigated the Taw Estuary. At the end of 2013 seven          coastline, he will have a chance to meet most of SIA’s
new accessible sections of the south west coastal path were        regional Peer Support Officers on an eight-month journey
opened up after £40k investment by the Rural Development           back to his starting point in Southampton.
Programme for England, making Devon and Cornwall even
more attractive to visitors. There is more accessibility           If you would like to sponsor Pete there is a link to his
information on the website www.southwestcoastpath.com              Just Giving page on his website at www.gbcoastwalk.com

SIA Healthcare 0800 023 8841                                                               FUNDRAiSiNG l in the news l 19
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