Paralympic Preparations - see page 32 - debate information real life - Spinal Injuries Association
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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
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.
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
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
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
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
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
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 2014Leading 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 11reb
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 2014The 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 13Introduction 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 2014Personal 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 15action 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 2014GETiNVOLVED 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 2014Walking 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 19You can also read
