Bobath NEWS Issue Eighteen Autumn 2009
THE
NEWSLETTER
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The programme’s presenter Dr Mark Porter explored how a joined-up approach to treatment can help children, visiting the Bobath Centres in London and Glasgow as well as speaking to medical experts at Great Ormond Street Hospital and Bristol Children’s Hospital. During her therapy session eleven year-old Katherine spoke
articulately of the everyday limitations that get her down, but she was not going to let it stop her leading an active life. “A lot of the time….I hold it in at school, no one really knows, but inside I am very, very, very jealous of my peers; extremely jealous of the way they move and I just find movement fascinating, because I have never been able to move freely on my own - always having to use a piece of kit like a wheelchair or sticks. A lot of them don’t understand; going up the stairs they think “Oh, you’re in a wheelchair, it must be so much fun. Like, you have no idea!” she said, “I’d rather be getting crushed on those stairs by big year 11’s than sitting in a little lift!” Liza, her mother also spoke candidly about the dawning realisation that Katherine was not developing physically, then went on to describe how their initial two-week treatment session at Bobath was a revelation. “I remember even the very first time we came” she said, “sitting doing sessions with Katherine thinking ‘what’s this all about?’ and within the ten days she grew an inch and this was purely the uncurling and the reduction of the tightness in her body. When you see those changes in your child’s body it’s just extraordinary.”
Bobath scores high in customer satisfaction and quality of services The Bobath Centre continues to provide parents, patients and visiting therapists with a high quality service. This was the conclusion of Virginia Knox following last year’s clinical audit of the Centre’s services. Virginia, a Bobath consultant physiotherapist developed the audit that ran between April 2008 and March 2009. She concluded that the appointments system continues to be of a high standard; the quality of clinical notes has improved; the current system for deciding the clinical mix of therapies for child patients is effective and that there is a high satisfaction rate among
One of our many satisfied customers!
parents of children and visiting therapists.
A survey of people visiting the Centre also showed high levels of satisfaction. When asked to judge the Bobath Centre overall in comparison to other services they had used (not necessarily medical), 73% considered the Centre excellent and 24% very good. Jayne Pearce, director of administrative services is happy with the findings. “I am pleased we have scored so highly, but will be studying the data over the summer and see where we can improve upon what we do.”
A synopsis of the report will be available to download from www.bobath.org.uk
Join the one 400 Challenge See page 2 for details ■
Continued on Page 3
Katherine Toomey gave BBC listeners a great insight into life as a young person with cerebral palsy when she was interviewed for Radio 4’s Case Notes programme in April.
Katherine Toomey
© Bobath Centre
© Bobath Centre
Katherine the Great
BOBATH
NEWS
One in 400 children born in the UK is affected by cerebral palsy. That’s one in 400 children who may struggle through life or one in 400 children who, with the right support, could grow up to reach their full potential.
We would like our supporters to join us in a new fundraising initiative – the Bobath Centre’s one■400 challenge.
We want you to raise £1,400 for the charity. This may seem a lot, but there’s no time limit – you can just do it at the pace that suits you. So, if you are a runner you could run a marathon and do it in one go or you can take it slowly and do smaller activities over a longer period. The point is that you will be actively supporting children who have cerebral palsy offering them the best opportunity to lead independent and fulfilling lives.
In return can give you all the support and encouragement you need to succeed. We won’t pester to raise the money; just help you on your way with things like:
• Publicity materials: Logos, photos, case studies, facts and figures etc. Everything you need to back up your fundraising. • Fundraising goods: T-shirts, collection tins, badges, balloons etc. • Ideas: Stuck for an idea? – We have hundreds. • Guaranteed places: We have guaranteed places in many of running events around the country, including the Virgin London Marathon 2010. • Advice: Want to know the best way to get free publicity your event? We can point you in the right direction. • Legal: It can be a minefield – but we’ve got the map. • You’re not alone: a forum to talk to other fundraisers and share ideas. • We will keep records of all the money you raise and make the gift aid claim, which we will add to your total.
Once we receive your one■400 challenge registration form* we will send you a` one■400 fundraising pack. This contains some great ideas to get started as well as tips on how to publicise your fundraising and essentials like a sponsorship form. *available to download from the Bobath website or by contacting the Roll of office. honour Gareth Heal Matt Smith Fundraising Jenny Mulholland Pete Smith Anthony Pearson Robert Saville Laura Joseph Colin Entwistle Rolant Jones Marcus Roach Darren Fallon Stephen Hencher Mark Mitchell
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For those of you who prefer an environmentally friendly way of enjoying Bobath News, we now have an ebook version on our website. You don’t need any special software, just visit the newsletters page, click on Bobath News and you can flip through the pages at your leisure!
News
Enews
Jane Turville takes up her role as a trustee of the children’s charity, replacing Helen Yarrow who stepped down earlier this year. Jane’s daughter was a child patient at Bobath and so is well aware of the issues and concerns facing parents. Lynzi Crisp and Mary Bishop are two recent additions to the Bobath therapy team.
New therapists Lynzi and Mary
Lynzi, a speech & language therapist, came to London from South Africa in 2003. She has worked as a locum therapist at the Lewisham Children and Young People’s Centre in south London.
Mary joined as a physiotherapist in the Adults’ Centre in September. She has previously worked in Oxfordshire in the intermediate community care team, the Oxford Centre for Enablement and the Radcliffe Infirmary. We are pleased to add Facebook as a way supporters can keep up to date with the charity. The social networking website is increasingly being used by charities to communicate with supporters and raise awareness of their cause and it is already proving a valuable addition to the Bobath Centre.
Kevin Gillespie, the Bobath Centre’s fundraising & development manager is pleased with progress. “It took me a while to get to grips with it all, but now it’s really exciting to see our fan numbers increase. It’s also good to see supporters respond to our posts almost instantly.” The site contains up to the minute news, photos, video clips and links to related sites. You can find us by searching for Bobath Centre for Children with Cerebral Palsy and then register as a fan.
Katherine the Great
Continued from Page 1
For one so young, Katherine gave a remarkably mature assessment of herself. “When I was little we used to come down to Bobath and that really used to help. I never really understood when I was small what it did to my body and how it was helping me because it was all through play. As you get older you suddenly realise you can’t just hide it so much so you have to learn how to cope with being disabled.” If you didn’t listen to the programme it can still be downloaded from the BBC website by going to www.bbc.co.uk/iplayer/console/b00k3zzj
© Bobath Centre
A voice for parents
New therapists
2009
© Bobath Centre
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Visit www.bobath.org.uk to join our mailing list and receive Bobath News online. The final stages of the database implementation began in July when the patients module went live. The database will make it easier for the appointments team to log and track patients’ records and allow therapists to add reports and share knowledge with the child’s local health professionals.
Patients database
Diana Joannides said “There’s a lot of work still to do but after two years we are moving forward with confidence. Once the admin staff and therapists are comfortable using the new system it will be a major improvement.” The final part of the jigsaw will drop into place in October when data from the adults’ centre is transferred.
Caudwell Children has supported children with over 100 different conditions and made over 2,000 donations to families with disabled children since it was established in 2000. It is the second largest voluntary provider of specialist equipment in the UK and will also fund therapy. Applications must be made on behalf of children under 18 years living in the UK.
Grants available: Caudwell Children
For more information email charity@caudwellchildren.com or call 0845 300 1348. www.caudwellchildren.com
The Bobath Centre has so far been unaffected by the current swine flu pandemic. Children with cerebral palsy are particularly susceptible to infection, and the Centre already has high health and hygiene standards. These were increased over the summer, with additional cleaning and reminder notices posted around the building. Information sheets are given to families on arrival and staff are directed not to come to work if they suspect that they are ill. We will continue to monitor the situation throughout the winter.
Swine Flu update
The Bobath Centre for Children with Cerebral Palsy does not directly endorse or recommend products or services advertised in Bobath News. We recommend that you speak to your Bobath therapist before purchasing a therapy-related product or service.
Contact us
Editor - Kevin Gillespie 020 8442 2276 Assistant editor - Sarah Terrazas Editorial and advertising enquiries: 020 8442 2276 or email: kevin@bobathlondon.co.uk
250 East End Road, London N2 8AU 020 8444 3355 Bobath Centre for Children with Cerebral Palsy, Registered charity 229663 Bobath Centre for Adults with Neurological Disability, Registered charity 1039162 ©The Bobath Centre 2009
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Golf day continues to shine The rain held off long enough for 60 golfers to enjoy the annual Videx Golf Day in August raising £8,700 for the charity.
Old Ford Manor Golf Club in Hertfordshire again played host as players took part in a group competition in the morning followed by a singles game of 18 holes. The day was rounded off with dinner followed by an auction that included a week in a luxury villa in the south of France, and dinner at a Gordon Ramsey restaurant.
Danial Rickard, Videx employee and a volunteer at the Bobath Centre, was full of praise for those who attended. “Given the current financial climate, I was especially touched by the generosity of the guests this year” he said. “Many of them have been coming to the golf day for years, and it’s really nice to see their continuing dedication to the charity.”
Paul Holgate, winner of the singles competition, with his trophy
Videx Paul Holgate
NEWS
Thank you to Videx Security Limited and to everyone who supported the event.
Paul drives down the fairway
Paul Kinsella, who knows a bit about driving, swapped his cab for clubs when he chose to support the Bobath Centre. As a London taxi driver, Paul occasionally picks up families from the Centre. So when he became captain of North Middlesex Golf Club he took the opportunity to help out by selecting the Centre as his nominated charity. On a sunny July day, 60 golfers joined him and his son Mark to play 18 holes, followed by a buffet and auction. The day was a huge success raising over £5,700.
This isn’t the first time the club has supported the Centre. “They were the charity of choice two years ago, and I think that it’s nice to help someone get the support they need” Paul said, “and I’m definitely coming along next year too.”
© Hendon & Finchley Times
BOBATH
John Penn, Kevin Gillespie & Paul Kinsella
My name is Anna and my son has cerebral palsy When Anna Wilson and her partner David were told that their newborn son has cerebral palsy the hospital could only give them the number of a bereavement counsellor. “It was the best they could do” said Anna, “because they just didn’t have the resources to support people through the shock of discovering they had a disabled child.” So she turned to the internet for help. Anna soon realised however, that although there were plenty of websites offering medical information, few supported families through the
emotional roller coaster of bringing up a child with cerebral palsy. Seeing a gap, she set up www.cptalk.com. “It’s not going to fix things” she says, “but may help parents cope with things, sort things, give bits of advice and offer a lot of support.”
Harry visits the Bobath Centre for therapy, but cptalk is independent. “It belongs” says Anna, “to everyone affected by cerebral palsy. It’s what I needed to help me through the difficult times, so I hope other families find it helps them too.”
ADVERTISMENT
Make difference make a will To find out how to leave a gift in your will to the Bobath Centre please contact Kevin Gillespie on 020 8444 3355.
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Mandy Franklin is used to managing complex projects. After a career in the City and then as PA to the managing director of a hotel chain, she is adept at making things run smoothly and working under pressure.
A therapy session
That doesn’t mean that the role of the appointments & funding manager for the children’s centre doesn’t test her capabilities. “I was recently asked how I organise appointments and, when I thought about it, came up with over 50 things that can influence the booking-in of a child for treatment. Fifty, and that’s just one child!”
© Bobath Centre
Small things can make a big difference
The administration of appointments is crucial to the efficient running of the Centre. Once the senior therapy team has reviewed the case notes and assigned the appropriate clinical support, Mandy is responsible for ensuring that the family’s visit to the Centre goes as smoothly as possible, and that all the relevant medical, clinical and social agencies are kept informed. During their visit, Mandy may be required to accommodate a family’s personal needs. For instance, a therapist may request a late morning appointment to allow time for a child’s medication to take effect; or with a child having difficulty feeding, a lunchtime slot so that their speech & language therapist can see the problem first-hand. “With the very young, you also need to work around sleep patterns because a tired and irritable child does not make for a good patient!” she says. ADVERTISMENT
Often the small things can make a big difference to families. “If you are here for a two-week treatment block you may be staying in a hotel room far from the comforts of home. This must be terribly difficult, particularly with a disabled child and other siblings in tow. So if we can arrange for their Friday appointments to be early so they can get out of London and on their way home before the rush hour, that can make life a little easier.”
Part of Mandy’s day is spent on the phone - fielding new enquiries, pursuing funding decisions or chasing referral letters. She also speaks to anxious or distressed parents but says that her training as a counsellor helps her remain calm and supportive. Occasionally she has to deal with a difficult caller, but Mandy is not one to be easily swayed. “Everybody is trying to do the best for their child and that’s only natural, but the Centre has to be fair to everyone and that’s what I try to do.”
Even with Mandy’s best efforts there are occasionally free spaces in the appointments calendar, but she insists there are good reasons for these. “Children get sick” she says, “and children with cerebral palsy are more vulnerable than most. If a child is ill we will reschedule their appointment for a later date, but it’s difficult to fill the two-week block they have left at short notice. Sometimes it just can’t be helped.” Mandy also has to take the staff into consideration. Annual leave, report writing, study leave, sickness, meetings and teaching commitments all have to be taken into account, then there are the visiting therapists, course participants... the list goes on.
Yet Mandy remains philosophical and upbeat about her role. “We try to accommodate everybody without compromising treatment” she says, “but inevitably we can’t keep everybody happy all of the time. Saying that, it doesn’t stop us trying.”
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Age restrictions apply
Volunteers at the Bobath Centre are of all ages. Some are still at school or heading for university; others may be retired with some time to spare. None, however, are quite as young as the volunteers who come to the Centre in late September. That’s because the only way we will sign them up is if they are under one year old. The Baby Course, or Introduction to Early Assessment and Intervention with Babies and Young Children to give it its full title, relies on a new group of infants each year to support our training programme. The course is designed for physios, occupational and speech therapists as well as medical professionals who work with the very young. It provides them with an introduction to the Bobath Concept and how it can be applied to preterm infants and children in the first year of life.
It’s a popular course comprising of lectures and video analysis, however it is in the practical demonstrations that our infant volunteers are indispensable. Only then can students study first-hand the typical movement patterns of a healthy baby and contrast what they have seen with a child of the same age who has cerebral palsy. The teaching team is led by Jean-Pierre Maes and Betty Hutchon. JP is one of Bobath’s most experienced practitioners specialising in neonatal and infant cerebral palsy. Betty is head
of children’s occupational therapy at the Royal Free Hospital, London and lectures in child development at the University of London Medical School. They are supported by Virginia Knox and Heather Holgate from the Bobath tutors’ team and by visiting consultants.
The benefits for the course members are obvious, but mums (and the occasional dad) also gain. They learn how their child is developing and what to expect in the coming months, and the parents and children who have cerebral palsy benefit from the close attention of some of the most skilled and experienced therapists in the country.
If you have a child under one year old and live near the Bobath Centre, please contact Kim on 020 8444 3355 about our baby courses.
ADVERTISMENT
Three of our runners before the race
There is nothing like a quiet stroll through Hyde Park on a Sunday morning, but if you were there on the first Sunday in September it was neither quiet nor was there much strolling to be done.
Instead, you would have been surrounded by 17,000 women taking part in the adidas Women’s 5K Challenge. The Bobath Centre entered a team of 38 runners, twenty-three of which were pupils and staff from Highgate Wood School in north London. The girls, aged between 12 and 15 years, each pledged to raise £50 for the charity, and collected sponsorship, baked cakes and held yard sales in order to reach their target.
The team has so far raised over £2,250 and donations are still coming in. Well done ladies!
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© Bobath Centre
Nothing like a quiet stroll
Fantastic Five
“It truly is a remarkable place” she said, “Charlotte has made fantastic progress by following the programmes set by the Bobath team and I would like to be able to give something back.”
Among them was Tracy Swain, who is nanny to four year-old Charlotte Hawkes. Tracy has accompanied Charlotte several times to the Bobath Centre for her two-week blocks of therapy and is full of praise for our work.
Feel inspired by Tracy and the rest of the team’s run? We have places available for the British 10K London Run 2010 on 11th July. Contact Sarah in the fundraising department to secure yours.
A small but perfectly formed team of Bobath supporters joined 27,000 other runners in the British 10k London Run in July.
And give something back she did – she and the rest of the team have together raised over £3,000 for the charity. Thank you to Tracy and also to Colin Hiscock, Louise Max, Richard Mumford and Thomas Booth for their sterling efforts.
Books for Bobath Every year, thirteen year old Eliza Ross from Stockton-on-Tees holds a fundraising event for charity and this year she hosted a signed book auction in
2009
© Bobath Centre
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her back garden to support the Bobath Centre. Eliza, who has visited the Centre a number of times, invited her friends and family and laid on a bouncy castle
Tracy with Charlotte on a recent visit to the Centre
and a host of other stalls to entertain them. Everyone had a great time and Eliza raised over £600. ADVERTISMENT
Joe and friends
Image: Jennie Cassidy
East of Ipswich
Three teenagers did their bit for the Bobath Centre this April when they cycled from their home town of Ipswich to Amsterdam and back to raise money for the charity.
Joe Cassidy, Luke Kennedy and Lewis Garrard set out from Heathside School in Ipswich, and rode 400 miles to St Paulus Special School in Amsterdam raising £800 for their efforts. They chose to support the Bobath Centre because Joe’s younger sister is treated here. “I know from personal experience that the Bobath Centre is a very good and worthwhile cause” said Joe, “there aren’t many people who know about it but I hope the ride will raise some awareness.”
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Flora London Marathon
ING New York City Marathon 2010 Register your interest now contact us for more info
Runners Steve Hencher, Anthony Pearson and Colin Entwistle before the start
Take Comfort and give Joy offer Reader£5.00 only p
Team Bobath was bigger than ever at this year’s Flora London Marathon and, with every one of our 16 runners smashing their fundraising target, our team raised over £31,000.
plus p&
Friends Gareth Heal, Matt Smith, Pete Smith and Mark Mitchell had a special reason for running this year because Gareth’s son Rhys was treated at the Centre.
Born three months premature, Rhys was diagnosed with cerebral palsy and is also deaf. Following MRI scans his parents were told that there was only a 50/50 chance that Rhys would walk, but at just two and a half years old he is a determined little man, and with the support of his parents and help from Marie his therapist, he has made great progress. “With their (the Bobath Centre’s) help we’re tipping the odds in Rhys’ favour and we hope that one day he will walk independently” says Gareth. We would like to thank all of Team Bobath for their hard work. Well done!
If you have your own place in the Virgin London Marathon 2010, or are interested in one of our guaranteed entries, please contact Sarah in the fundraising department. Gareth celebrating with Rhys and a friend
Following its success last year, we will again be offering our CD Comfort & Joy as part of our seasonal fundraising efforts. The album raised over £3,000 last year and we hope to raise even more this Christmas.
Songs include Christmas classics such as Ding! Dong! Merrily on High and In the Bleak Midwinter as well as traditional songs from Ireland, Wales and Eastern Europe. The CD makes a lovely gift for friends and family or could even make a nice alternative to Christmas cards.
Morocco 2010 Mount Toubkal Trek 22 – 26 September 2010 Minimum sponsorship £2,300 Contact the Bobath Centre for details