Kidz to Adultz Magazine July 2019

kidz

to

ADULTZ

MAGAZINE

ISSUE 4 / JULY 2019

IN THIS ISSUE...

BRAINWAVE SCALES THE HEIGHTS CHARLES DICKENS CHARITY LINK 24 HOUR POSTURAL CARE £18M CENTRE OPENS EMPLOYING PERSONAL ASSISTANTS

posture & mobility for children and young people Chunc’s range of manual attendant controlled postural management wheelchairs are easy to use, economical to maintain and, above all, offer indoor and outdoor mobility for children and young adults with moderate to specialist needs.

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Modular support options Four sizes available Suitable for indoor & outdoor use Tie down points for transportation Up to 110kg user weight 45 degree tilt in space Power assist option

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sales@chunc.com

Welcome!

WELCOME TO OUR LATEST ISSUE

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s you can see from the front cover, in this issue of Kidz to Adultz Magazine, we are featuring Olly Murs who took part in a recent fundraiser for the Brainwave charity with Ambassador Natalie Preston.

We have lots of other information about a variety of charities that can help in many ways, including one that is about to celebrate its 70th anniversary and another that has been around for an amazing 166 years!

We love receiving all the positive comments you are sending about the magazine, we want to say thank you for those. We are always keen to hear what you think so do feel free to get in touch with your suggestions for future issues.

If you do have a story that you would like to tell us all about for the next issue, which is due for circulation in November and will be available at the Kidz to Adultz North exhibition, then please do get in touch by contacting us at magazine@disabledliving.co.uk.

CONTENTS...

Brainwave scales the heights............................5 ÂŁ270,000 investment......... 7 70 years of lifechanging work................... 11 Charles Dickens link to charity..................... 13 Bedtime worry-free for Summer........................ 20 Employing personal assistants.......................... 22 From school to award winner..................... 26 ÂŁ18m Centre opens its doors................. 30 24 Hour Postural Care Diet............................. 34 From one box to another.......................... 40

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz

FANCY BEING IN THE NEXT ISSUE?

If you would like to talk to us about promoting your company or organisation in the next issue of our Kidz to Adultz magazine, call us on 0161 607 8200 or email us at magazine@disabledliving.co.uk Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY

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don’t know

US YET?

THIS IS WHO WE ARE AND WHAT WE DO….

DISABLED LIVING

A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz Exhibitions. www.disabledliving.co.uk

EQUIPZ

The team comprises of occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment.

Helpline: 0161 607 8200

BLADDER AND BOWEL UK

The team provide information and advice for children, young people and adults with Bladder and Bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff.

In addition, the website offers a wide range of downloadable free resources.

Helpline: 0161 607 8219 www.bbuk.org.uk

KIDZ TO ADULTZ EXHIBITIONS

We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver 4 events nationally in Farnborough, Bristol, Coventry and Manchester. www.kidzexhibitions.co.uk

TRAINING

We run a comprehensive training programme for professionals and carers.

Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisation’s requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training

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Employing your own care and support Employing your own personal assistants gives children and their parents choice and control about how they’re supported. Our free, online toolkit can help you get started.

‘Employing personal assistants’ toolkit This toolkit has step by step advice to help you hire your own personal assistants. It’s available online or you can email marketing@skillsforcare.org.uk for a paper copy.

Individual employer funding There’s also funding to pay for training to help you hire your own personal assistants and to train them. Find out more at www.skillsforcare.org.uk/iefunding.

www.employingpersonalassistants.co.uk

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HEARTTHROB OLLY HELPS

Natalie and Brainwave SCALE THE HEIGHTS

THE NATION’S FAVOURITE CHEEKY HEARTTHROB, OLLY MURS, SCALED OVER 50 METRES INTO THE CLOUDS ABOVE THE O2 ARENA ON FRIDAY, 17TH MAY, IN AID OF THE CHILDREN’S CHARITY BRAINWAVE

B

rainwave is a charity that exists to help children with disabilities and additional needs to achieve greater independence by aiming to improve mobility, communication skills and learning potential through a range of educational and physical therapies.

Brainwave has three centres across the UK with one in Bridgwater, Somerset, one in Witham, Essex and one in Warrington, Cheshire.

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Over 600 children are following the Brainwave Programme.

Olly has been a Patron for the charity for over eight years and was joined in this brave challenge by the charity’s Ambassador, Natalie Preston, to mark her 30th birthday.

Natalie has been a regular visitor to the Kidz to Adultz exhibitions as her mother Sally explained: “I have been attending the Kidz exhibitions for over 10 years now and Natalie has

been coming for pretty much as long.

Natalie has purchased wheelchairs and equipment directly as a result of visiting the stands there, and loves them because everything relating to her needs is there under one roof.

She has also met disabled friends

there from different parts of the country which has been great as they can go round together.”

Olly, who performed at The O2 Arena that night as part of his 2019 All The Hits Tour, exclaimed: “What an incredible experience! It was made even better knowing I was doing this for such an amazing cause alongside Natalie who is such an inspiration.”

“I first met Natalie when I became a Patron for Brainwave. She’s been on such an incredible journey and I hope we can raise as much money as possible to give back to the charity that has helped her so much.”

“Ever since we first spoke about doing this for Brainwave with Natalie, it was something I couldn’t wait to be a part of. I know all about the adrenaline rush of being on stage at The O2, but I can now say that being on top of the venue itself is something else!”

Natalie, from Southport, was diagnosed with Cerebral Palsy at just nine months old. Her parents were told it was unlikely she would still be alive at 30. They were also told she would never walk, talk, sit up or be able to be educated.

But thanks to the support of Brainwave and their qualified speech therapists, occupational therapists and physiotherapists, Natalie has

defied all the odds. She is educated to master’s degree level and now works for the BBC at Media City.

Natalie said: “Brainwave has been part of my life and helped our family so, so much that I really wanted to tackle this challenge to

Brainwave has been part of my life and helped our family so, so much that I really wanted to tackle this challenge to show them just how grateful I am

show them just how grateful I am. I was so pleased when Olly said yes to helping me do this. It was a truly amazing experience and I’m now more determined than ever to raise my sponsorship target of £30,000 for Brainwave.”

The charity does not receive any government funding and relies on

voluntary donations to run it’s three permanent centres.

Phil Edge, Brainwave CEO, said: “I can remember Natalie when she first came to Brainwave as a two-year-old tot as I was one of her therapists at the time. I am so happy that our charity has played a big part in helping her become the incredible and inspirational woman she is today.”

“It’s no mean feat scaling The O2!

Not only has Natalie had to contend with the fear factor but also the physical challenge as a person living with Cerebral Palsy. I am in absolute awe of her and Olly and can’t thank them enough for the support they have given and continue to give to our charity.”

Natalie is over halfway to achieving her sponsorship target of £30,000 having already raised over £15,000 through online and offline donations.

She hopes the money raised will help more children with disabilities reach their potential.

To sponsor her, please visit: www.justgiving.com/fundraising/ overtheo2forbrainwave Or text ‘OLLY’ to 70660 to donate £3.

The website for Brainwave is at www.brainwave.org.uk

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NEW FUNDING PARTNERSHIP RESULTS IN

£270,000 investment

AN EXCITING NEW FUNDING PARTNERSHIP WILL SEE A DEDICATED INVESTMENT OF £270,000 RING-FENCED SPECIFICALLY TO HELP CHILDREN WITH DISABILITIES ACROSS THE UK

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he Royal College of Paediatrics and Child Health (RCPCH) and Newlife the Charity for Disabled Children have joined forces to offer talented postdoctorial researchers the opportunity to compete for a pioneering three-year fellowship award.

The partnership, launched at RCPCH’s annual conference, will enable the chosen recipient to have a real impact on the lives and health of children with disabilities.

Newlife, which has been investing in medical research for more than 10 years, will contribute £135,000, with RCPCH providing match funding. The successful researcher will receive a fellowship grant to the value of £250,000 to advance paediatric research in the field of childhood disability, while receiving support to progress their knowledge and develop their own skills and career.

Newlife provides essential equipment to disabled and terminally ill children. The charity’s investment, to date, on research has concentrated on birth defects, funding over 300 projects to the value of £16 million.

Now, this new research partnership will focus on providing much-needed insight into the secondary conditions children endure as a result of the physical impacts of disability.

Sheila Brown, OBE and CEO of Newlife, said: “We are delighted to work with such a prestigious organisation on this ground-breaking project and hope other charities follow our lead and invest in other opportunities to further advance paediatric research.”

The Royal College of Paediatrics and Child Health (RCPCH) is the membership body for paediatricians, representing more than 19,500 child health professionals in the UK and abroad.

It is responsible for the training, examinations and professional standards of paediatricians across the country, using its research and experience to develop recommendations to promote better child health outcomes.

Jo Revill, Chief Executive Officer of RCPCH, added: “Investing in paediatric research is vital if we’re to continue to improve the health and wellbeing of

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children. Despite children making up around 20% of the UK’s population, only 5% of public and charitable research spend is allocated to children. The importance of investing in child health research cannot be underestimated; getting it right for children means we’re far more likely to have healthier future generations.”

Jo added: “This partnership with Newlife is incredibly exciting and focuses on a much needed area of child health research. We look forward to awarding the first Fellowship later this year.”

Applications for the Research Fellowship Award will open in the autumn. For more information contact research@rcpch.ac.uk

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Variety, which was known for many years as The Variety Club, provides a wide range of equipment

CHARITY HAS

70 year anniversary IN IT’S SIGHTS

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IT’S EASY TO FORGET ALL THE GOOD WORK THAT GOES ON IN THE UK AT THE MOMENT. HOWEVER, GREAT, GENEROUS, LIFE AFFIRMING THINGS ARE HAPPENING BY PROGRESSIVE PEOPLE AND CHARITIES, AND ONE CHARITY ESPECIALLY IS SOON TO BE CELEBRATING 70 YEARS OF INCREDIBLE LIFE-CHANGING WORK

V

ariety, The Children’s Charity was born as The Variety Club in 1949. It was brought here from the USA and inaugurated into the Variety Club of Great Britain. It was formed by notable figures within the film industry, so it came as no surprise that major stars and even members of the Royal Family started attending fundraising events or came on board as much welcomed ambassadors.

Since its inception, Variety has supported nearly a million disabled and disadvantaged children across the country, changing lives, stepping in to make a difference.

Dan White, Storyteller and Development Associate at Variety explained: The charity has always been known as “The one that does the sunshine coaches,” and of course that is absolutely correct. The charity is rightly proud of it’s coaches and there have been thousands on the roads over the years, but they are not just a means for children to access days out they otherwise wouldn’t

have, they perform other important, subtle duties. All these children and schools, venturing out of the same environment, also feel the benefits of improved mental and physical health, they feel the importance of inclusion as they explore new places, mix with new people, start new conversations

Since its inception, Variety has supported nearly a million disabled and disadvantaged children across the country

and break down barriers. Sunshine Coaches are vehicles of change.”

“Aside from the coaches,” Dan says, “Variety provides equipment and days out, such as: sleep systems, car seats, hoists, specialist baths, theme park visits, theatre trips etc. All these things don’t just improve mobility and independence for the recipient child, school, organisation or young adult, but give the surrounding family much support and in places, much needed respite.”

Michael, from Rotherham, recently approached Variety for a grant for his children. “Variety has been fantastic!

My children are severely autistic and

nonverbal. The equipment provided has offered different sensory experiences for both boys. Equipment for families with disabled children is so expensive and thanks to Variety our children now have the chance to have their own space to feel relaxed and soothed. It has made a huge difference to the whole family.”

Dan concluded: “We have a lot to be proud of in seventy years, but we want to do more. Ideally every child, school and young adult should have access to all they need to support their lives. Charities, like ours, in an ideal world, should be a thing of the past. However until that day arrives, Variety the Children’s Charity will be here.”

Variety provides grants for specialist equipment, including wheelchairs to individual children and not-for-profit organisations working with under 19’s.

For more information visit www.variety.org.uk or call 020 7428 8100.

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NEW REPORT FINDS CHILDREN’S SERVICES AT BREAKING POINT

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onstricted funding and ever increasing demand have left children’s services in England at breaking point, a report published by the Housing, Communities and Local Government Committee has found.

The report calls for a funding settlement that reflects the challenges local authorities face in delivering children’s social care, and recommends a minimum increase to core grant funding of £3.1 billion up until 2025.

The report suggests that the 2018 Spending Review must reflect the challenges facing local authorities and core funding should increase by a minimum of £3.1 billion and that increased funding must go hand-inhand with systemic change if local authority children’s services are to

be sustainable in the long-term. It also suggests that more work needs to be undertaken to understand and address the factors driving ever increasing demand for children’s services and that barriers to creating greater residential care placement capacity should be investigated.

Committee Chair, Clive Betts MP, commented: “Supporting vulnerable children is one of the most important duties that local authorities provide. It is vital that we have the right support available in every part of the country, to ensure that vulnerable children get the support they need. Over the last decade we have seen a steady increase in the number of children needing support, whilst at the same time funding has failed to keep up.”

He added: “It is clear that this

approach cannot be sustained, and the Government must make serious financial and systemic changes to support local authorities in helping vulnerable children. They must understand why demand is increasing and whether it can be reduced. They must ensure that the funding formula actually allows local authorities to meet the obligations for supporting children that the Government places on them. We have reached a crisis point and action is needed now.”

While local authorities are responding to financial and service pressures by prioritising child protection work and reducing spending on non-statutory children’s services, the majority are still overspending their annual budgets.

“I have always found Smirthwaite to be caring. They care about the needs of my clients, they listen to what I need and they care about providing the child with the very best solution” Claire, Occupational Therapist South West

At Smirthwaite, we help support the lives of children with special needs with a range of beautifully designed furniture and equipment.

To find out more visit smirthwaite.co.uk or call us on 01626 835552

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Supporting children and their families for life

Snappi Cloud Designed to mirror the appearance of the most luxurious high-street pushchairs whilst incorporating a whole host of features and functions to make both of your lives easier. Such features include high levels of tilt in space and back recline (both without fixed positions), transportable in a wheechair-adapted vehicle, extensive range of growth, height-adjustable push handles – to name just a few!

Email: info@tendercareltd.com Phone: 01903 726161 Website: www.tendercareltd.com

THE PICKWICK PAPERS,

Oliver Twist, NICHOLAS NICKLEBY

– ALL LINKS TO FASHION AND TEXTILE CHARITY

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n 1853 a band of kind-hearted textile merchants wanted to help the widow and children of a colleague who had passed away, so they set up a trust to ensure their future wellbeing. Little did they know that some 166 years later, that one trust would still be alive and well – but instead of supporting one family, it now supports thousands.

The charity that was founded that day is now the Fashion & Textile Children’s Trust (FTCT). It’s been through many changes in a century and a half, and can even count a literary giant as one of its earliest patrons.

Charles Dickens became the Chairman of Appeal for the Warehousemen & Clerk’s School, one of the earliest incarnations of the Fashion & Textile Children’s Trust. The charity even has a copy of a speech he gave on behalf of the charity on Thursday, 5th November 1857, at The City of London Tavern on Bishopsgate Street.

Closing his speech, Dickens said: “I most heartily wish that I could charm you now not to see me, not to think of me, not to see me – I most heartily wish that I could make you see in my stead the multitude of innocent… little children who are tugging at my skirts, when I ask you, on their names on their behalf, and in their little persons, and in no strength of my own, to encourage and assist this work.”

Although shrouded in Dickens’ flowery language, the mission he was conveying at that time has changed very little in the 166 years since.

Today FTCT provides financial support for children whose parents or guardians work, or have worked, in fashion and textiles professions. The charity is proud to support hundreds of families where the child has additional needs – including physical and learning disabilities and autism.

One of these families was Natalie and her son Robin. Natalie turned to FTCT for financial support when Robin needed a specialist wheelchair that the NHS couldn’t provide. She heard about the charity through her husband Darren, who works at Allied Textiles.

Natalie says: “We live in a rural area

The charity helped when Robin needed a specialist wheelchair that the NHS couldn’t provide

and love getting out of the house for walks. Life as a carer can be tough and the fresh air is good for all of us, especially Robin’s wellbeing. He

Although shrouded in Dickens’ flowery language, the mission he was conveying at that time has changed very little in the 166 years since

gets anxious in crowded spaces, so countryside walks are ideal for him, but we couldn’t take him out with his NHS wheelchair. We tried to take him out but his wheelchair can only cope

with flat surfaces - which are rare around here. Darren or I would end up carrying Robin or dragging the wheelchair backwards through the mud. When the weather is really bad our options are so limited and we are literally trapped in the house.”

“After one disastrous walk, I went online and found out about a type of Kinetic wheelchair which is all-terrain.

It’s moulded to Robin’s shape, so would last him into adulthood. The seat is lower too which means Robin can use his upper body to drive without putting stress on his core.

It even has a huge umbrella which protects me and Robin from the rain.

I am so glad we applied. It has made a huge difference to Robin’s mental wellbeing too. He is more confident in public places and has even started sailing with a disability charity.”

For more information about FTCT visit www.ftct.org.uk

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Making a difference

R

in the gym

un wholly by volunteers, the Not For Profit Organisation, BEAM! Gymnastics provides a safe and accepting environment where disabilities and challenging behaviours are not a barrier to experiencing gymnastics.

BEAM! Team volunteers accept, understand and embrace that every session will be different and have enjoyed watching gymnasts develop and gain confidence in physical activities and social interaction.

It all started in September 2017 with a six week pilot. Eight gymnasts attended the sessions held at Fairford Primary School. The demand has been such that by April 2019 BEAM! is operating from venues in Cirencester and Fairford, delivering three weekly gymnastics sessions to 22 children with additional challenges and an ever growing waiting list.

The BEAM! Team has in excess of

20 regular volunteers, supporting the organisation in diverse roles including Coaching, Assistant Coaching, Admin and Finance, Website Design, Photography and Fundraising Support.

We leave each week with a hot exhausted little boy who simply Beams through gymnastics In November 2018, the BEAM! Team won the ‘Community Team Award’ at the CDC Community Awards and were presented with a cheque for £1,000.

The Coaching Team support

the gymnasts with many accomplishments at many different levels, including being courageous enough to enter the gym, balancing on a BEAM! without holding a coach’s hand, performing a forward roll out of their wheelchair, swinging around a bar after being frightened to hang on it, working with others, performing team balances and coping with different noises to name but a few.

Clare, Mum to BEAM! Gymnast Oscar tells us: “Since attending BEAM! my son’s confidence has grown more than I can measure or express. He is prepared to try new physical activities and attempts more climbing and balancing than ever. His gross motor skills have developed so much that he is now accessing playgrounds and soft play in a way that he never could before.

He is so proud of his new found skills and confidence which in turn makes All images courtesy of Jonathan Macauley Photography

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Think Wheelchairs Think SMART

At SMART Wheelchairs we are able to meet and accommodate the needs of some of the most complex disabilities. Our aims and objectives are to provide as much independent access for all of our customers by using the latest technology and equipment available.

WE ARE THE SOLE UK SUPPLIER OF KARMA EUROPE POWERCHAIRS

Here at SMART we believe we’re best equipped to deal with your needs. From electric and manual wheelchairs, specialist seating systems that deal with a wide range of conditions to control systems that allow the user to control anything from a light switch to a PC or even a Sky TV Box. We realise that everybody is an individual and that is why all our chairs are tailored to you, the individual. Our aim is to provide each client with maximum comfort and functionality.

You can rest assured that SMART will only recommend the right wheelchair or equipment that is best suited for our customer’s needs.

S MART Wheelchairs Limited 01553 404200 • info@smart-wheelchairs.co.uk • www.smart-wheelchairs.co.uk

Introducing a revolutionary new bedding range ideal for your whole family Scan Mobility has announced, in partnership with B-Dermofresh, the launch of a revolutionary new bedding range.

100%

waterproof fitted sheets and pillowcases

B-Dermofresh is the new generation of technical textiles, incorporating zinc oxide which is essential for skin protection and regeneration. With these unique benefits specially conceived for bedding products, this innovative new system is the perfect, smoothest, natural sustainable fibre, with an unnoticeable pioneering second skin membrane. 100% waterproof, breathable fitted sheets and pillowcases, which are soft to the touch.

Protection for everyone.

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me incredibly proud of him. He has achieved two badges level 8 and 7 which he wears on his BEAM! tee shirt with that new found pride.”

She added: “My son has also made friends who in his words means ‘I can just be me at gymnastics’, who he now plays with and sees outside of gymnastics as well. He

has made one particular friend who he has play dates with. They listen to each other and play really well together. He knows he has autism and is proud of who he is. The BEAM! Team understand his needs and help him to integrate fully socially and physically in the sessions. It is this that has helped him to form

Start a new chapter

meaningful friendships with his fellow BEAM! members and make progress through the criteria. We leave each week with a hot exhausted little boy who simply BEAM! is through gymnastics.”

For more information visit www.BEAM!gymnastics.co.uk

Calibre Audio Library brings the joy of reading to young people with sight problems, dyslexia or other disabilities.

To join, call us on 01296 432 339 or visit www.calibre.org.uk Plus visit us at the Kidz to Adultz exhibitions throughout 2019

 @CalibreAudio 18

Registered charity no. 286614 VAT registration no. 138840202

 calibreaudio

*

FIRST SESSION IS FREE

£10

per service user BOOKING REQUIRED

The Sensurround Experience A safe multi-sensory space offering a private environment where senses can be developed and explored for both adults and children with special needs. Suitable for groups or individuals.

*T&Cs apply

Telephone: 0161 214 5959 Email: info@redbankhouse.com

@redbank.house

Redbank House, 4 St. Chads Street, Manchester, M8 8QA

@redbankhouse

Part of Disabled Living. Charity No: 224742

@redbank-house

www.redbankhouse.com

BEDTIME NO LONGER A WORRY FOR SUMMER OR HER PARENTS

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ummer is six and is living with Spina Bifida, she had a hole in her spine leaving her nerves exposed and making her paralysed from the chest down, relying on a wheelchair full time and the daily care of her family.

She also has Hydrocephalus leading to an excess build-up of fluid on the brain leaving it vulnerable to damage.

Now, thanks to local charities including the Hastings Community and Hastings United Football Club raising over £5,000, Summer has been provided with a specialist Quoddy bed.

The bed was bespoke and made to fit her individual needs such as having a backrest and knee break in the appropriate places. The Quoddy is designed to grow with the child and will expand to 3 different lengths starting at 152cm then growing to 168cm and finally ending at 183cm.

Summer is now able to sit herself up in the mornings with a simple push of a button and without any

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assistance from her parents. The bed also came designed with a unique tilt function helping clear any possible chest infections Summer might have.

The bed is not just customised and designed for practical needs but also personalised with headboards and bright colours.

Summer’s parents are delighted: “All in all the bed has made night times one less worry for us and

Summer now enjoys getting into her bed. When a profiling bed was first mentioned we imagined a hospital bed, we could never have imagined she would have something that looks this great.”

The Quoddy bed was supplied by Centrobed. For more information, visit www.centrobed.com

Employing personal assistants

- a personal viewpoint

EMPLOYING PERSONAL ASSISTANTS (PAS) GIVES CHILDREN AND THEIR PARENTS CHOICE AND CONTROL ABOUT HOW THEY’RE SUPPORTED

A

PA can support people with lots of things including social activities, getting ready, meal times and at school or college.

It also means that they become an ‘individual employer’ and are responsible for recruiting, managing and training their PAs. This might seem daunting at first but there’s lots of help out there.

Nadia Clarke is an individual employer and has employed a team of PAs since she was 8 years of age.

Nadia explains: “From the age of 8 to 18 I was supported by a team of 15 PAs. They greeted me after school, helped with my homework and supported me at teatime.

They also helped me to go out on a weekend for example shopping or to

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the cinema. They joined me on family days out and when I was a bit older, they supported me to see the world on holidays abroad.”

Don’t get me wrong I love my parents, but growing up it was lovely going out and having fun with PAs, and not feeling I had to ask my parents to do so

“When we started looking for PAs”, she says, “I had a fantastic Social Worker from the disabled children’s team. They listened to mine and my family’s thoughts and feelings, and agreed and shared the direct payments pathway that best suited my needs. We also made contact with other families who shared their experiences and knowledge with us. My Mum and Dad helped with recruiting and inducting PAs. When PAs started, they shadowed my parents to learn how to best support me with feeding, drinking, accessing the toilet and being out in the community. My parents also ensured that my PAs had the right training so they could support me well.”

Nadia says that employing PAs has

TM

Camphill Communities

The only college in Wales to be accredited by the National Autistic Society and judged as ‘Excellent’ by Estyn, the Education and Training Inspectorate for Wales, Coleg Elidyr provides young adults with moderate to severe learning difficulties and disabilities with the opportunity to build skills and knowledge to improve their lives.

An on-site multi-disciplinary Therapy Centre includes Speech and Language, Counselling, Occupational Therapy and a Clinical Psychologist.

Coleg Elidyr

Informal visits are welcome.

We are also happy to visit you.

Specialist college for young people with learning difficulties and disabilities.

Please call 01550 760400 or email admissions@colegelidyr.ac.uk 23 For more information, including parent testimonials please visit www.colegelidyr.ac.uk

helped with her own independence.

“It’s allowed me to go out on a weekend and not feel like I had to be with my parents all the time. Don’t get me wrong I love my parents, but growing up it was lovely going out and having fun with PAs, and not feeling I had to ask my parents to do so. It also meant that my parents had more time for their other children, work commitments and housekeeping duties.”

Nadia concluded: “The transition between children’s and adult’s services was a challenging time, but my team and family were very supportive and I still have the same PAs now. The fact that I know I can wake up and do as I wish is an absolute dream which enables me to reach the goals that I set for myself.

I continue to live the life that I want to live and have the freedom that I deserve with the support of my PAs and family members.”

Find out more about employing your own personal assistant on Skills for Care’s toolkit at www. employingpersonalassistants.co.uk If you get a personal health budget and employ your own PAs (or support a child who does), you can

Individual employer, Nadia Clarke, wins award for ‘Best individual who employs their own care and support’

apply for money for training. Find out more at www.skillsforcare.org.uk/ PHBholders.

Please note this funding isn’t available for direct payment holders who are under 18.

HERE’S THE EASY WAY TO FIND WHAT YOU ARE LOOKING FOR...

The Disabled Living Supplier Directory provides information about companies and organisations that provide equipment, products and services to support disabled children, adults and older people.

You’ll find the Supplier Directory on our website www.disabledliving.co.uk

24

V Available in 3 fabric colours and a vinyl version

FROM SCHOOL TO UK DISABLED

entrepreneur award winner

BY JOSH WINTERSGILL

HI, I’M JOSH WINTERSGILL. I’VE BEEN LIVING WITH SPINAL MUSCULAR ATROPHY – TYPE 3 FOR 25 YEARS NOW

I

ts inherent progressive muscle wastage throws constant varying challenges. Please excuse the pun but it has been keeping me on my toes ever since – in a good way!

In 2009, I left school to go to college, realising with SMA it was impossible for me to become an RAF pilot – it was a childhood dream. So, I picked a course I could make a career out of. Computers were the obvious option and I pursued a National Diploma in Software Development, obtaining the equivalent of 3 A*. This was good enough to get me into university!

The transition from home to university was interesting. Leaving home after 18 years of having your family doing your personal care, putting dinner on your plate and having to do your washing is luxury… well good job, because that is what carers are for! Although carers are not always plain sailing.

26

I will never forget the iconic moment my dad put me into bed at university and the door closed. The sense of initial isolation, no uni friends and not having your parents to just call on when you want something.

The following morning, I had

The process of finding accessible accommodation, getting care in place and agreeing the funding within 2 months was like trying to find a needle in a hay stack

a random carer coming in to get me out of my bed whilst having to explain my routine in absolute detail is tedious! The following 6 months were to be the biggest test for me, to the point I nearly quit university.

My family however told me to stick it out – they just didn’t want me home shouting on the Xbox.

I stuck it out, which proved to be the best decision I ever made. I must thank my social worker as I believe the transition to Direct Payments, getting a care agency in place and liaising with University West of England was as smooth as I could have imagined.

At university, I studied IT management for business and low and behold I was the first person in a wheelchair to study this degree across the country and still am to this day – unbelievable! The course allowed for an industrial placement, involving work for 1 year.

Tree of Hope are the crowdfunding charity of choice helping children and young people with a disability or illness by supporting their families to raise funds for specialist care that is not freely available to them via the UK healthcare system. We give access to corporate donations, GiftAid, potential grants from Trusts and Foundations and most importantly provide reassurance to donors.

with Disabled Living for in partnership with online with products Shop to make life Disabled easier Living for equipment and products to make life easier partnership with ...in partnership with

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• Children under the age of 18, with access to funds up to their 25th birthday

Over 250,000 items in stock at competitive prices

The main advantage of purchasing via the Disabled Living website, is the opportunity for you or your clients to speak to With over 250,000 items in stock at Occupational Therapists or competitive prices, we are offering Continence Specialists for you choice from a wide range of free impartial help and manufacturers including mobility With over 250,000 items in stock atliving products, and advice, ensuring aids, daily unnecessary continence suppliers together with competitivepurchases prices, weareare offering not made. telecare and telehealth equipment.

• Children living anywhere within the UK • A child suffering from a disability, illness or autism

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• Cerebral Palsy

The best of both worlds... you choice from a wide range of manufacturers including mobility When you living shop online with Disabled aids, daily products, and Living for equipment and products to make life easier you or your clients can speak to continence suppliersortogether with Occupational Therapists Continence Specialists for free impartial help andand advice, ensuring unnecessary purchases are not made. telecare telehealth equipment.

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Large choice from a wide range of manufacturers Telecare and telehealth equipment www.disabledliving.co.uk/online-shop

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TRANSFER WITH EASE TO A COMFORTABLE SEATING POSITION SELECT toilet lifter is height adjustable and perfectly adapts to other Pressalit products, such as PLUS support arms.

Pressalit Care Ltd., 100 Longwater Avenue Green Park, Reading T: + 44 (0)118 923 2696, F: + 44 (0)118 986 8867 www.pressalitcare.com

I successfully managed to secure a placement with Hewlett Packard which meant moving to Reading!

The process of finding accessible accommodation, getting care in place and agreeing the funding within 2 months was like trying to find a needle in a hay stack, again I have my social worker to thank here. I ended up having to live in a Neuromuscular rehabilitation centre for 1 year because there was no accessible accommodation available near work, this came with 24/7 care.

My local council agreed to pay £40,000 for me to stay at this centre, acknowledging my prospect of employment and quality of life could be greatly enhanced by gaining this experience. I later went on to graduate from UWE with a 1st class honours degree.

3 months after graduating, I landed a full-time job working for Hewlett Packard as a Cyber Security Manager.

However, the job was not enough of a challenge for me.

In the summer of 2017 I was in Tenerife, sat by the pool drinking

Corona and reading a favourite book of mine – ‘Start with Why’, by Simon Sinek. This sparked brain waves around the many issues I have faced with travelling on and off aircraft and what could be done to improve it.

After googling some ideas, it quickly became apparent there was a huge opportunity to create a product to help improve the uncomfortable, unsafe and undignified processes disabled passengers with physical reduced mobility go through just to go on holiday.

On return from holiday, I started researching and putting plans in place to develop my idea into a prototype whilst working on intellectual property and a business plan.

By November 2018, I was in a position to apply for the UK Disabled Entrepreneurs Award, after submitting the application, I was shortlisted down to 5 out of 82 applicants. I then presented to the Founder of easyJet, Sir Stelios HajiIaonnou and his board of trustees about the business idea I had. In the evening, we were invited to

the awards ceremony, which to my amazement, I found out I had won £30,000 to kick start the business.

After the awards, Sir Stelios invited me back to his HQ in London. Where we discussed a brand license and investment deal with his easyGroup family of brands.

I have since left my job and I am now looking to grow the business in the UK and subsequently globally over the coming years.

In the 21st century everything around us is changing extremely fast and our ability to adapt is so critical. Living with SMA, or in fact any disability, we subconsciously learn how to adapt. I try to use this experience to my advantage in the real world whilst helping others to solve real world problems.

“The measure of intelligence is the ability to change.” - Albert Einstein Please check out our business at www.easyTravelseat.com and come and see our stand at the Kidz to Adultz events.

kidz

It’s showtime!

EVENTS

NORTH

MIDDLE

Thursday 14th November 2019 EventCity, Manchester

Wednesday 4th March 2020 Ricoh Arena, Coventry

SOUTH

Thursday 7th May 2020 Farnborough International Exhibition & Conference Centre, Farnborough

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ADULTZ

to

SAVE THE DATES FOR OUR FUTURE EVENTS...

WALES & WEST Thursday 2nd July 2020 Thornbury Leisure Centre, Bristol

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THE FIRST OF ITS KIND AS

new £18m centre OPENS ITS DOORS

THE NEW £18 MILLION CAUDWELL INTERNATIONAL CHILDREN’S CENTRE (CICC), SET WITHIN THE GROUNDS OF KEELE UNIVERSITY, STAFFS, IS THE FIRST OF ITS KIND IN THE UK – BRINGING TOGETHER ASSESSMENT, DIAGNOSIS, FAMILY SUPPORT AND RESEARCH INTO AUTISM, UNDER ONE ROOF

D

esigned and built in consultation with people with autism, parents, carers, clinicians and experts, the facility includes state-of-theart assessment suites, a sensory garden to help children interact with nature and family activity suites for on-going workshops and support programmes.

It will allow parents and children

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across the UK to work with a multidisciplinary team of specialists in one place and enable families to get a diagnosis for their child in as little as six weeks.

An early diagnosis of autism can be vital in helping families understand their child’s behaviour, as well as putting support in place to help them cope.

Under current NHS guidelines

children who are thought to be autistic are meant to be assessed within three months. But a report by former Health Minister Norman Lamb in July 2018, revealed families are being forced to wait more than two years to be assessed and almost four years to receive a diagnosis.

Mum-of-six Victoria Priest, said she spent nearly a decade trying to get a diagnosis for her daughter Layla, 10,

31

who first exhibited symptoms at nine months old.

She said: “Layla was our third child and at nine months old we took her to the doctor. She rocked severely and I knew something wasn’t right but we were told to ignore it by health professionals and told that she’d grow out of it. As she got older, she became disruptive. We’d tried everything to get some sort of diagnosis, but nobody seemed to care and nobody would listen to us.”

Victoria added: “Layla was 10 when she went to Caudwell and within two weeks of her assessment, we had a diagnosis – after nearly 10 years of trying. Staff at Caudwell were the first people who actually listened to us and looked at our evidence.

They were observing things in her behaviour that I didn’t even realise.

This new centre will provide hope for thousands of families like us that are fighting to get a diagnosis for their children.”

Trudi Beswick, CEO of Caudwell Children, said: “We have spent the last 19 years listening to families consistently telling us they do not get the support they need. It is their stories that are at the heart of this project and their needs have shaped the new service and the Centre.

When all evidence points to the longterm benefits of early intervention, the delays families face are not acceptable and Caudwell Children aims to change the way families access support and prove there is a better way.”

Trudi explained: “By keeping the needs of autistic children and families at the forefront of our service and helping as many

32

children as possible at the Centre, we will develop the necessary body of evidence to ultimately influence clinical guidelines and collaborate with partners to make a lasting impact on society’s understanding and acceptance of autism, changing

We have spent the last 19 years listening to families consistently telling us they do not get the support they need

the futures of all autistic people, in the UK and internationally.”

John Caudwell, Philanthropist and Founder of Caudwell Children, who personally funded over £10 million of the cost to build the state-of-the-

art facility, said: “I have met so many mums and dads who have fought tooth and nail to get referred to the right professionals and even then, found themselves in a complex and confusing system, waiting months for appointments and years for a diagnosis. They told me about the woeful inadequacies in diagnosis, education and funding for autism, which meant they helplessly watched their children deteriorate without any support. This can’t carry on, I thought, and I backed the charity’s plan to fundraise for and build the UK’s first world-class centre.”

As well as speeding up waiting times for assessment and diagnosis, the CICC will also offer long term and on-going support for families following an autism diagnosis, through educational workshops and programmes and teaching sustainable interventions that can be implemented at home.

The centre will also be working closely with clinical and academic partners from the international autism community to share insight and research from the front line of assessment and diagnosis, helping to further the evidence based around the condition and will publish reports and research from leading clinicians, and share knowledge through conferences, teaching and training hosted on site.

You can find out more about the Caudwell International Children’s Centre at www.caudwellchildren.com

AMBITO EDUCATION A Salutem Group Company

Ingfield Manor – fulfilling potential through Conductive Education We are a Centre of Excellence for Conductive Education, for children and young people who have neurological motor impairments.

We are a non-maintained day and residential special school for children and young people between the ages of 3 and 19 years.

We aim to provide an exceptional learning environment for children and young people who have neurological motor impairments, such as cerebral palsy. Some of our students also have additional needs like visual impairment and more complex medical needs.

Our curriculum is stimulating and diverse and delivered through Conductive Education, and we are acknowledged as one of the leading centres for this education system in the UK. Our staff work collaboratively using a transdisciplinary team approach.

This approach involves professionals sharing roles, with blending of skills, teaching and learning.

Our qualified nursing team are here to enable the children and young people at the school to access all aspects of the curriculum by ensuring that their many health care needs are met throughout the school day.

We also run the Ingfield Manor School for Parents, which provides a specialist service for families of children with cerebral palsy and other motor learning difficulties. We support families with babies and children under five years of age. Parents and children learn daily living skills together using the principles of Conductive Education.

01403 782294 • ingfield.manor@ambitoeducation.co.uk Ingfield Manor School, Ingfield Manor Drive, Five Oaks, Billingshurst, West Sussex RH14 9AX www.ingfieldmanorschool.co.uk

Craig-y-Parc School – a place to grow We are a specialist school that offers flexible placements to children and young people aged 3 to 19 years old, with complex support needs, including physical and sensory impairments, and severe or profound and multiple learning difficulties (PMLD).

Through our nurturing environment, and multi-disciplinary approach across education, nursing, residential and therapy, we guide our students to realise their full educational and personal potential. We also have a specialised team of Conductive Educators to aid our students in developing their daily living skills.

Students can access a variety of specialist on-site facilities including a hydrotherapy pool, sensory room and assistive technology hub, as well as outdoor learning areas and a woodland walk set within our 33 acre site.

02920 890397 • craigyparc@ambitoeducation.co.uk Craig y Parc School, Heol y Parc, Pentyrch, Cardiff CF15 9NB www.craigyparc-school.co.uk

Welcome to Ty Cwtch, our Children’s Home at the Craig Y Parc School site At our residential children’s home, we make sure the young people we support get the most from every experience and can find the best ways to improve their physical, cognitive and communication skills. This can be through one to one support or may include the benefit of a team of specialist staff.

Ty Cwtch can accommodate up to 16 young people in twobedded bedrooms (single occupancy is available).

We offer a variety of packages, each tailored to the individual needs of the young person. Whether you require all year accommodation or are here for short breaks, you can enjoy the same level of personalisation, interaction and choice of fun activities.

02920 890397 • kristian.cousins@ambitoeducation.co.uk Craig y Parc School, Heol y Parc, Pentyrch, Cardiff CF15 9NB www.craigyparc-school.co.uk

24 HR POSTURAL CARE DIET

prescription process

BY SHRUTI RAI-VERMA

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POSTURAL CARE REFERS TO AN APPROACH THAT AIMS TO PRESERVE AND RESTORE BODY SHAPE AND MUSCLE TONE FOR PEOPLE WITH MOVEMENT DIFFICULTIES (PUBLIC HEALTH ENGLAND 2018)

A

ble-bodied individuals can easily change their posture if they find themselves sitting uncomfortably but children and adults with complex physical disabilities might not have that option. Due to limited movement opportunity, their body might become unable to effectively control its posture and movement, resulting in gravity taking its toll. This might result in poorly adopted postures and over a period of time may become permanent, limiting their movement choices.

Children with movement difficulties are at a high risk of developing changes to their body shape because they are growing. Puberty growthspurts, present a particularly risky time, in which any existing distortion can become exaggerated and over time permanent. Their body shape might continue to deteriorate, resulting in health problems, pain, increased equipment needs and greater dependence.

Some of the physical health problems associated with body shape distortion include: • problems with the musculoskeletal system, such as hip dislocation, contractures, curvature of the spine and reduced movement • difficulties in swallowing and risk of choking • respiratory problems • sleep disturbance • constipation or reflux • pressure on internal organs • recurrent pressure sores Such complications may cause discomfort and possibly severe pain.

This may also impact negatively on a child’s emotional state and psychological well-being. Therefore, affecting their quality of life.

HOW CAN WE HELP?

Identification of need: There is a strong growing body of evidence suggesting that right equipment and positioning techniques can help to protect body shape in people with movement difficulties.

The simplest way that any one of us can identify clients who need postural care diet is by using Mansfield check list (CIC 2009) or for professionals by looking at the child’s GMFCS. Pountney recommends that children in the GMFCS groups IV-V should start a 24-hour postural management in lying as soon as appropriate after birth, in sitting from 6 months, and in standing from approximately 12 months (Postural management for children with cerebral palsy: Consensus statement).

Children with a motor disorder at GMFCS level III require postural management programs that emphasise postural activity from an early age (Early interventionliterature review 2018).

Person centred assessment process: 24-hour postural care requires an inclusive intervention approach that considers the individual’s postures throughout the 24-hour period, including sitting, standing and lying postures.

Assessment is focused on preventing body shape distortion, promoting function and ongoing rehabilitation. It is based on recent research with quantifiable outcome measures and involves a postural care specialist therapist (Simple Stuff Works).

The process of assessment begins with developing an understanding of the person’s postural needs, lifestyle,

emotional state, family dynamics and skill sets of care givers.

A thorough assessment by a professional should include measurement of the child’s range of movement, tone, functional mobility level, hip parameters and trunk and pelvic symmetry in both sitting and lying positions.

The therapist is then able to compare the measurements between the 2 positions and can then work out what is correctable and what is not.

This measurement of a person’s postural needs in both sitting and lying positions can help inform the prescription of appropriate positioning aid that can help manage muscle tone, reduce pain, ease physical care, improve sitting posture and tolerance, and help people sleep better. Standing is also looked at if appropriate.

This detailed assessment of needs will also include how the child communicates and how discomfort can be recognised.

This guides the therapist during the prescription process, with pain being an important consideration for prescription.

Prescription of a postural care diet plan: Depending on the findings of the assessment, a postural care diet plan can be prescribed.

Prescription of a 24 hr postural care diet encompasses a holistic person-centred approach that is a gentle, non-invasive way to promote health and quality of life for children and young adults with complex physical needs.

One of the main goals is to maximise the client’s level of comfort. A postural care diet plan

35

also promotes health and well-being.

It can prevent and delay deformity, improve quality of life, maintain or improve independence and maximise potential.

Therefore, it is restorative and rehabilitative in nature and can support an ongoing active functional rehabilitation plan.

Prescription process: A 24 hr postural care diet involves the understanding of a client’s 24 hr postural care needs and the setting of postural management goals and a risk and benefit analysis of potential strategies for reaching these.

The child is at the centre of the plan, taking into account other health conditions such as respiratory, continence or temperature regulation problems, epilepsy or gastrooesophageal reflux.

Depending on the child’s individual needs postural care support can include a wheelchair prescription, individually designed seating, a standing frame, night-time supports such as special cushions to help them sleep straight, regular exercise or active therapy programs devised by physiotherapists. It may also involve recommendations and referral for spasticity management, surgery and orthotics.

Continued ongoing support and timed review is key for success of the equipment prescription.

Training forms an important part of the prescription process. It aims to empower the child and their support system. It provides them with the opportunity to ask questions specific to their child's needs.

Making people aware of good postural care improves quality of life and can, in some extreme circumstances, be lifesaving.

The following markers can be used to determine success of 24 hour postural care: 1. Achieving person centred goals around improvements in quality of life.

2. Reduced long term health complications such as respiratory and gastrointestinal problems which can lead to

36

premature death.

3. Equipment that is able to meet the client needs long term, and reducing overall burden of cost through reassessment and prescriptions of expensive equipment.

4. Reported decrease in pain, better sleep pattern, progress in active rehab, ease around personal care and positive changes to behaviour.

5. Reduced number of repeated hospital admissions.

Finally, success of a postural care plan requires input from postural care specialist trained professionals, the individual and their support system.

While therapists are uniquely suited to assessing, observing and understanding the interaction of sitting and lying postures, they may not be best placed for intervening on an ongoing basis.

Families and direct caregivers who are consistently part of an individual’s life can support that person and implement 24-hour posture care management principles most effectively.

Key Message: Detailed expert assessment and postural diet prescription is imperative to help prevent body shape distortion.

Postural care training is important:

It provides families and care givers with accurate information and empowers them with effective skills and the ability to self-manage the risk of body shape distortion.

The earlier the intervention, the better – but it is never too late to start protecting and restoring someone’s body shape. (Mencap, 2011).

References:

Credit: Some of the information has been obtained via postural care course, simple stuff works. https://www.simplestuffworks.com/ wp-content/uploads/2016/10/Its-MyLife-2016.pdf

Pountney, T,E., Mulcahy, C,M., Clarke, S, M & Green E,M (2000) The Chailley Approach to Postural Management. Birmingham: Active Design ltd.

Farley R, Clark J, Davidson C, Evans G, Maclennan K, Michael S, et al. What is the evidence for the effectiveness of postural management? Br J Ther Rehabil.

2003;10(10):449–55.

https://www.pmguk.co.uk/data/page_files/ Research/Hutton%20Full%20Report.pdf http://www.familycarers.org.uk/ Downloads/Postural_Care_booklet.pdf

https://www.nes.scot.nhs.uk/ media/3560277/NES%20learning%20 byte%20postural%20care.pdf http://www.child-development.org. il/210215/cerebral-palsy

http://www.leckey.com/pdfs/Early_ Intervention_-_Literature_Review_2018.pdf https://www.mencap.org.uk/sites/default/ files/2016-11/Postural%20Care%20 booklet.pdf

MEDPAGE SPECIALIST CARE SOLUTIONS Celebrating 35 years of creative innovation EPILEPSY CARE

AUTISM CARE

SEIZURE DETECTION

COMMUNICATION - VISUAL SCHEDULING

Medpage will exhibit at Kidz to Adultz West & Kidz to Adultz North 2019 Medpage Limited T/A Easylink UK T: 01536 264 869 | E: sales@easylinkuk.co.uk W: www.medpage-ltd.com MedPageLtd/ @MedPageltd

10% Discount on telephone orders Quote Able 7 when ordering

Scan for website Medpage Limited has traded in the healthcare industry for over 35 years, specialising in developing technologies to aid care of people with Epilepsy, Austism, Dementia and Senior Care.

Epilepsy Medpage have manufactured seizure detecting products for over 25 years. Our products are sold worldwide with an unrivalled reputation for accurate, affordable seizure detection.

Autism

Medpage actively promotes the use of Assistive Technology to aid people living with Autism. Our range of products can help with: Communication, Visual Scheduling, Motivation & Reward, Video Modelling and Independent Living.

Dementia At the Alzheimer’s Show in London, Medpage launched the MemRabel 2i, a device that introduces the potential of Smartphone technology to create daily schedules,

medication and important appointment reminders.

Senior Care With a rapidly ageing population and lack of public funding to maintain adequate care for the elderly, independent living are the buzz words for this decade.

Medpage are well placed to offer self-carer and professional carer technology solutions for: Home safety, falls detection, Alzheimer’s support aids and home carer support products.

Top clinical negligence

S

team recognised

olicitors at a law firm in Shropshire are celebrating after being named as having the top clinical negligence team in the country.

Lanyon Bowdler won the Clinical Negligence Team of the Year title at the Proclaim Eclipse Personal Injury Awards in Manchester, beating off competition from across the UK. Kay Kelly, Head of Clinical Negligence at Lanyon Bowdler, said: “This is absolutely wonderful news and is a fitting tribute to the expertise and dedication of our clinical negligence lawyers. Clinical negligence is a particularly sensitive area of law which makes a tremendous difference to people’s lives. A successful claim can be vital for the person’s recovery and future quality of life, so to be recognised being the best team in the country for our work means a great deal.”

For more information on Lanyon Bowdler, visit www.lblaw.co.uk

S E U S IS E R U T U F E H T S DON’T MIS E IN Z A G A M Z T L U D A O OF KIDZ T As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles.

Just visit...

www.kidzexhibitions.co.uk 38

Your posture management experts The Miko buggy offers a fully reversible seating position and accommodates SOS seating such as the lightweight Flexi Seat aiding the daily management of children requiring postural support

P Pod Our award-winning P Pod provides sociable postural support & our Mobile Base fits through standard door frames and is available with powered tilt function.

MSI MoJo Customised to the individual, the MSI can be used with a variety of bases including our own Mojo wheelbase

Specialist seating and mobility equipment for use in the home and community

NEW ASSESSMENT CLINICS OPEN NOW To book a FREE assessment or to view our full range of specialist seating and postural products call us today on

01283 520400

enquiries@specialorthotic.com www.specialisedorthoticservices.co.uk

Sarah pictured with Bee and her brothers Tom, Ted and sister Nell

Transition

... FROM ONE BOX TO ANOTHER

BY SARAH CLAYTON

A COUPLE OF WEEKS AGO WE CELEBRATED MY OLDEST DAUGHTER REACHING THE GRAND OLD AGE OF 18. FOR ANY YOUNG PERSON THIS IS A HUGE MILESTONE BUT FOR BEE IT WAS A PARTICULARLY POIGNANT EVENING

W

hen she was six she was diagnosed with a malignant brain tumour, she endured over 12 months of intensive treatment and survived. Aged 9 she suffered a stroke, which further complicated her needs, again she

40

survived. On the health front things are pretty stable for now, we manage the side effects of her treatment well and she is settled in a mainstream college doing a course that she enjoys.

When I say that we manage the

side effects of her treatment well I genuinely do mean we. Not she.

Bee’s treatment means that she finds it difficult to process information and to retain new information. That’s ok because she has a really supportive family and between us we get to the

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carebase

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Soft wall/floor system Safe windows Radiator guards TV protectors Bed options Bathroom solutions

FREE assessments www.caFrebase.net/ot/ultralow and measure up plans provided

Check out the website for more details - www.havenspace.co.uk Tel: 01609 785360 info@carebase.net 41

what it means and how we as Team Bee might be affected.

Transition is the transfer of responsibility for the care and support of a young person from children’s services to adult services.

It is not one of the usual rites of passage for young people growing up, like passing your driving test or learning not to mix the grape with the grain… In fact it’s got nothing to do with young people – it is a process that sits entirely with services. We have no choice in whether we want to transition to adult services, when it will happen, how it might happen, it’s going to happen whether we want it to or not.

Legally Bee is now an adult. She knows this because she has been given a leaflet telling her so, and

numerous hospital appointments, remembering when they are and planning how to get to them on time, we listen attentively to the health practitioners, we remember to ask the relevant questions and we concentrate throughout the appointment. Again we, not necessarily she, but again that’s ok – we are a team and we are on the same side.

Last summer Bee became unwell and we needed to go to A and E. She was 17 years and 2 months old. We rocked up to the Children’s Hospital knowing where to park, where to go, we had an idea in our heads of how the next few hours might pan out.

The plan changed abruptly however when we were told that, because of her age, she could no longer be seen there. We had to head to the big Adult Hospital A and E on a Saturday night… cue tears from me and enter another member of our team – one of my very supportive sisters who had made the journey with us. We ended up having a short stay on an adult ward, it wasn’t great, it wasn’t even good, but mercifully it was short. It got me thinking about Transition,

42

As we transition from a box labelled child to a box labelled adult I am left wondering… will the box be the right size for her… will it be big enough for all of the people invested in keeping her safe and healthy?

the context of Team Bee, the support network that she has around her. I know her within the context of her life experiences. I know her within the context of supporting her to learn at school and how she processes information.

I love to see her develop new friendships and networks and I know that in time these will take over from me – but this will be within a time frame that suits Bee, not because an arbitrary date has been set in order to meet the needs of our health system.

We know from the appalling statistics coming out of the Learning Disability Mortality Review that people with learning disabilities and autism have a far shorter life expectancy than those who do not.

We also know that one of the most effective protective factors for people at risk of poor treatment within the NHS is to have someone in their lives that loves them. My love for Bee is endless and unconditional, as we transition from a box labelled child to a box labelled adult I am left wondering… will the box be the right size for her… will it be big enough for all of the people invested in keeping her safe and healthy? I hope so, but I have an inkling that something fundamental has changed, that the sands have shifted and that we, Team Bee, will need to proceed with caution from here on.

MORE ABOUT SARAH telling her that she no longer needs anyone to attend her appointments with her. The truth is that she isn’t and she does. Think about your own teenage kids if you have them, are they adults? Would you hand over all responsibility for their decision making entirely to them? I’m 43 and I still question whether I should be in charge of my life.

Please don’t misinterpret what I am saying; I don’t want Bee to be treated like a child. I support her with an encyclopaedic knowledge of her – no one has known her as long as I have after all. I know her within

Sarah is passionate about posture. She has worked with families of children living with complex disability since the late 1990’s. Her life’s mission is to enable parents and practitioners to understand the risks children face if they find it difficult to move and to help put an end to avoidable complications such as hip dislocations and scoliosis.

Sarah has three other children, works full time and can regularly be found wearing her jumper inside out.

www.fbcmb.co.uk

Trusted and Compassionate

Specialists in Head and Brain Injury Claims Our Serious Injury and Medical Negligence specialists understand how traumatic the consequences can be when you or a loved one is injured as a result of an accident or medical negligence.

We will support you and your family to move forward by putting you and your recovery first with access to rehabilitation and continuing care where possible. We will work tirelessly on your behalf to secure the compensation you need to live your life to the full.

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Head & Brain Injuries

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Spinal Injuries

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Medical Negligence Claims

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Court of Protection & Deputyship

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Susan Todhunter

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01902 393460

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susan.todhunter@fbcmb.co.uk

www.fbcmb.co.uk

6-10 George Street Snow Hill Wolverhampton WV2 4DN FBC Manby Bowdler LLP is a Limited Liability Partnership.

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