Living Positively with Cerebral Palsy
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Bobath Scotland Conference

World Cerebral Palsy Day - 1/10/14

Bobath Conference Hampden Park Glasgow

I attended the first Bobath Scotland Conference in Glasgow.

There were many experts attending who talked about different aspects of Cerebral Palsy. Professor Nick Watson presented on “The effects of ageing for people with cerebral palsy.”

He made some very important points:

•Cerebral palsy is not just a childhood condition.

•He had spoken to adults in their later life (50 +) who had been previously walking and working. They had to give up work and had become fulltime wheelchair users.

•This was a because of their condition had not been managed effectively in their adults lives. They usually lost mobility due to picking up an infection and having a long hospital stay. The participants of the study where not offered rehabilitative physio to get them back up to where they were before. It was just accepted that they were getting older and had cerebral palsy so they would end up in a wheelchair. The participants were part of a marginalised group because they were getting older and had cerebral palsy.

•Professor Watson highlighted the problems adults were having:

• _pain and its physical and psycho-social effects;

• _contractures;

• _spasms;

• _body maintenance issues;

• _walking and balance issues;

• _movement issues;

• _functional and practical everyday task issues;

• _posture and seating issues;

• _strength issues;

• _transferring issues;

• _breathing issues

• _orthotic issues.

•Professor Watson stated that there is a need for adult therapy and treatment. There needed to be research carried out on effective treatments. He also highlighted that cerebral palsy is not a static condition.

•Another presentation I attended highlighted that cerebral palsy was not present in the clinical standards for adult neurological health services in Scotland.

•There is a clinical pathway for children called the Cerebral Palsy Integrated Pathway Scotland (CPIPS). This involves protocols surrounding physio assessments and pelvic xrays. This is put in place so children with cp can achieve the best physical function possible. There is no clinical pathway in Scotland for adults.

• There was a question time hosted by Louise White from BBC Radio Scotland.

•Panel members included:

• Philip Vervaeke, Senior Physiotherapist, Bobath Scotland

•Siobhan McMahon MSP

•Professor Nick Watson, Glasgow University

• Elaine Boyd , Treasurer Bobath Scotland

•Keith Redpath West Dunbartonshire Council

• I asked the first question :” I understand from the presentations today that there is not a clinical pathway for adult’s with cerebral palsy. What are the NHS and the Scottish Government doing about this?”

•There was a discussion about this. The main issues that arose were:

•There are no medical or Allied Healthcare Professionals that specialise in adult cerebral palsy and some adults have had no support since they have left school.

•When an adult is referred to physio it is because they have a problem for example: pain or muscle contractures. Even then, a person with cerebral palsy is put to the back of the queue to wait like everyone else.

•Some parents and carers were finding it very difficult to use Self Directive Support payments to fund treatment for their son or daughter. Local authorities are classing physio as a health need rather than a social care need. Adults with cerebral palsy are having to self fund.

•The transition to adult services for a person with cerebral palsy is inadequate. There is no clinical pathway and lobbying of our MSP’s needs to be done. Stephanie Fraser CEO of Bobath Scotland said “ we are far stronger if we all speak together.”

•I want to thank Bobath Scotland and their sponsor Digby Brown Solicitors for a brilliant day and it really raised awareness.