Bobath Scotland
The next item of business is a members’ business debate on motion S4M-04624, in the name of Patricia Ferguson, on Bobath Scotland. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises the importance of Bobath therapy for people with cerebral palsy, which it understands affects one in every 500 births and impacts on people’s ability to walk, move, talk, eat and play; considers that, while there is no cure for cerebral palsy, it is possible to improve independence and quality of life with therapy; understands that the Bobath centre in Port Dundas, Glasgow, is the only one of its kind in Scotland and provides multidisciplinary specialist therapy, thereby giving children the opportunity to grow and develop and make a huge difference to their lives and the lives of their families, and wishes Bobath well in its important work.
I ask members to imagine the experience of Dominic and his parents. Dominic was born three and a half months prematurely, weighing just 2 pounds and 11 ounces. He struggled to survive for the next 12 weeks and was diagnosed as suffering from cerebral palsy at the age of nine months. Dominic cannot walk or talk, and for five years his parents did not know whether he understood them when they spoke or was able to make sense of the world he lived in.
It was at the end of an intensive block of therapy for Dominic, while his parents were discussing with the therapists what had been achieved, that the breakthrough came. As his mum and dad answered questions and made points, the therapists noticed that when his parents answered “yes”, Dominic blinked. The session was interrupted so that Dominic could be asked whether he was saying “yes”, too. He blinked again and, after some further exploration of this newly recognised trait, his parents knew that a whole new range of possibilities had opened up for Dominic.
Dominic is now 19 years old and, like most other teenagers, he enjoys a full life. He is now a student at college and for six years he attended St Ninian’s high school in Eastwood, where he loved the daily buzz of a large mainstream secondary school. He enjoys nights out at the pub and attending gigs with his personal assistants, and—like many other teenagers—he plays his music far too loudly. He also visited Parliament for the first time two weeks ago. Without the help of the Bobath therapists, however, Dominic’s world would be much more limited.
Bobath came to Scotland in 1995 because Dominic’s parents wanted to avoid the long and wearisome journey to London for Dominic and other Scottish children who would benefit from Bobath’s expertise. Dominic’s dedicated parents and others who shared their vision set it up and the charity now has excellent premises at Port Dundas in my constituency. Many members will have met some of the staff of Bobath when they visited Parliament two weeks ago, and I am sure that they will have been impressed by their passion and commitment.
The staff at Bobath think that all cerebral palsy sufferers in Scotland should have access to the kind of therapy that they can deliver, and I agree with them. Bobath is an holistic therapy that looks at ways of making more natural movements that can be used in everyday life. It recognises that everyone has their own needs and develops therapies that are tailored to the individual. It combines the disciplines of physiotherapy, occupational therapy and speech and language therapy to give people with cerebral palsy the skills to explore the world, communicate their needs and participate as much as possible in all aspects of their lives. It also allows the family to continue to work with and support their child.
People with cerebral palsy also need emotional support and help to reduce the pain that the constriction of muscles and joints can bring. The staff would be keen to point out that Bobath may be based in Glasgow but is available to children around Scotland. However, that is the nub of the problem. Bobath therapy is available, but its take-up is patchy because it is not always funded by local national health service boards. Sessions are intensive and families usually come to Glasgow to experience Bobath, but if the therapy is not paid for by the NHS, the family is left to cope with the cost themselves.
I met several families at the Bobath reception in Parliament who told me of the difficulty that they had in finding the money to pay. Some used savings; others were able to rely on a good employer. One parent made the point that having a child with a disability is expensive: if the parent of an able-bodied nine-year-old plans to buy a bike for their Christmas, they can expect to pay about £100, but the cost of a running bike for a nine-year-old is £1,400. Having to pay for vital therapy for a child is another cost.
Last year, 24 per cent of Bobath’s funding came from NHS boards, whereas the proportion the previous year was 29 per cent. It is projected that in 2012-13 only 17 per cent of funds will have come from the NHS. In addition, the Scottish Government contributes £6,500 from the unified voluntary sector fund, but even that is not guaranteed to continue in the future. That means that access to Bobath therapy can depend on where someone lives.
Many health boards will rightly argue that they employ Bobath-trained therapists, but the opportunities that those therapists have to use their skills in the way that Bobath teaches are often curtailed by the size of their case load and the volume of work that they have. That is why Bobath has launched its precious lives appeal, which seeks to ensure that no child is denied such therapy because of their family’s inability to pay.
I know that the minister has visited the Bobath centre and has observed for himself the work that is done there. I sincerely hope that, in his closing remarks, he indicates that he will look at the funding arrangements for what is a tried and tested range of therapies with a view to helping Bobath to provide a service that is accessible to everyone who needs it, regardless of where they happen to live.
12:56
I thank Patricia Ferguson for bringing this welcome debate to the chamber. I also apologise to Ms Ferguson and the chamber, as I will have to leave before the debate concludes, because I have a Finance Committee-related meeting with the House of Commons Welsh Affairs Committee.
Cerebral palsy is the term for a group of disorders of the development of movement and posture that cause limitations of activity and which are caused by damage that occurred to the foetal or infant brain. As well as having a movement disorder, most people who are affected will suffer from disturbances of sensation, cognition, communication, perception, behaviour and/or epilepsy. People who live with cerebral palsy have little independent ability to walk, talk, write and take part in everyday activities. Patricia Ferguson pointed a poignant picture of the life of Dominic, a youngster who suffers from the condition.
Cerebral palsy affects around one in 500 births in Scotland. Despite developments in maternity and paediatric care, the number of children who are born with cerebral palsy is not decreasing. Its most common cause is damage to the brain while the baby is growing in utero, which can be found in 80 per cent of children with cerebral palsy. Other factors can include genetic problems, malformations of the brain and maternal infection, such as rubella or toxoplasmosis.
The Bobath centre in Glasgow is the only one in Scotland to provide multidisciplinary specialist therapy for young children, which helps them to become more independent and improves their lives and those of their families. Bobath therapy is extremely effective because it is tailored to each individual who is cared for. Each child’s limitations and abilities are assessed and a care and therapy plan is devised by specialists. Bobath ensures that each child’s needs are met. The therapy plan is frequently reassessed in accordance with the child’s developments.
As we have heard, the therapy that Bobath provides includes physiotherapy, occupational therapy and speech and language therapy, and one of its most successful treatments is neurodevelopmental treatment. Studies of children who have received Bobath NDT therapy have demonstrated improvements in motor function and self-care skills and improved walking, reaching, hand opening and hand use, which are all highly significant for children who are unable to develop at a similar pace to others. That shows that Bobath therapy vastly improves the life of the child and their family.
Since April, Bobath has had an adults centre for people who live with acquired neurodisability caused by strokes, head injuries, multiple sclerosis, spinal cord injury and Parkinson’s disease, as well as those who live with cerebral palsy. The fact that Bobath goes out of its way to care for people with short-term disabilities as well as those with long-term disabilities makes it a diverse and giving charity.
The treatment that is given to adults improves or, in some cases, restores function that has been impaired, and Bobath’s approach to treating adults with neurological disabilities, which was developed in the 1950s, has achieved international recognition as one of the most successful approaches to the treatment and management of people with neurological conditions. That treatment has been made possible in Scotland by a £100,000 grant from the Robertson Trust for a two-year pilot scheme to provide adult therapy.
The excellent Bobath Scotland charity also provides a parent support group at its centre in Glasgow, which gives parents and carers the opportunity to meet others in similar situations and gives affected families support, advice and reassurance that they are not alone. Each group meeting is facilitated by a member of Bobath’s therapy team and meetings are held at lunch time, to make them highly accessible.
There are many opportunities to fundraise for Bobath. It provides training and allows people from all over the country to take part in raising money for an excellent cause. However, as Patricia Ferguson pointed out, the charity needs more Government and health board support.
Many of us attended Bobath’s excellent reception in the Scottish Parliament last Thursday, which Patricia Ferguson mentioned. Volunteers do things such as mailing out literature, data input and placing collection boxes in communities, and they organise charity events such as coffee mornings, fashion shows and quizzes. Members can assist with that.
I am running out of time, so all that I will do is make a plea to the minister to support Patricia Ferguson’s view that we must not have a postcode lottery in the provision of Bobath services. In my area, NHS Ayrshire and Arran does not assist Bobath. That should change, so that people from across Scotland who need the therapy can benefit from it.
13:01
I applaud Patricia Ferguson for bringing Bobath Scotland to the Parliament’s attention and I thank Kenneth Gibson for speaking in support of her motion.
Bobath Scotland has existed for 18 years. As we have heard, approximately one in 500 children born in Scotland is affected by cerebral palsy. Bobath Scotland supports 135 such children across the country. I have no doubt that it benefits from the fact that its cousin organisation in England has existed for somewhat longer—50 years—and treats 300 children a year, as well as the families connected with those young people.
I outline the existence of both organisations because, as I hope the minister is already aware, Bobath Scotland’s existence creates a body of knowledge about the challenges that relate to cerebral palsy and about the problems that are faced not only by the young people concerned but by families and friends who are trying to help. That body of knowledge informs the national debate about what is required for the future and about the changes that can be made to affect young people’s quality of life and quality of experience.
Patricia Ferguson outlined the difference that therapy had made to one young person’s life. One hopes that every young person in Scotland who needs access to the support and treatment that are available through Bobath Scotland can benefit from that. I have no doubt that the minister will outline that the national health service across Scotland has many Bobath-trained practitioners, but I think that he and other members would accept that the centre of excellence develops the way forward for the future and informs the best treatments.
I also have no doubt that the excellent facility at Port Dundas in Glasgow—I know it reasonably well and I know the quality of the environment that is provided there—enables the education of people who are new to the experience of cerebral palsy and who are trying to come to terms with what it will mean and the impact that it will have. The facility creates a training environment for people who want to develop and to support families who are experiencing cerebral palsy in their midst. It also provides a support mechanism—a means of mentoring and counselling family and friends who are trying their best to ensure that young people can make the most of their lives and develop appropriately.
The centre of excellence in Glasgow is an important resource for Scotland. I would like to think that all families in Scotland can access it and that it can be used as a resource for all of Scotland. As a member for South Scotland, I know the difficulties for families who try to travel to Glasgow to access treatment. Nevertheless, given the quality of the treatment that is provided there, it is important that that avenue should be made available to them.
The main part of Patricia Ferguson’s speech was about the funding element. Currently, Bobath relies heavily on charity. Many people would think that it is appropriate that, where a cause reaches out to the public in Scotland, the public will want to support it. It is right that we pay due regard to the Robertson Trust’s support, and I hope that the minister will bear in mind the need for funding and that he will support Bobath Scotland where he can to the best of his ability.
13:05
At the outset, I put on record the apologies of my colleague Alex Fergusson for not being able to attend the debate but assure Bobath Scotland that he continues to work on its behalf in his constituency in Dumfries and Galloway.
Like others, I thank Patricia Ferguson for bringing the debate to the chamber and for highlighting the important work of the Bobath Scotland charity, which has done much since its inception in 1995 to improve the independence and quality of life of those affected by cerebral palsy who have experienced the multidisciplinary specialist therapy programme that it provides. From its centre in Glasgow, Bobath Scotland has helped young people with cerebral palsy to develop the skills that they need to live a full life. It has done so by involving the whole family and the extended support network and by bringing together specialists in occupational therapy, physiotherapy and speech and language therapy with community therapy teams to support on-going work with young people at home and in the community. As a result of that co-ordinated approach, there is a can-do attitude, which helps parents to focus on what their children can achieve rather than the negative side of what they cannot do. That is of enormous help to those who are faced with the day-to-day problems of attaining achievable goals for their loved ones.
I confess that I had never heard of Bobath Scotland before it came to Parliament, but Stephanie Fraser and her colleagues ensured that we knew about it whenever we went near their stall in the members’ lobby. At the garden lobby reception on the Thursday evening, it was a privilege to meet and speak to families who have benefited from Bobath’s work for their children.
Bringing together the various allied health professionals who can help those affected to develop their skills and reach their maximum potential seems such a simple concept, but it is not always easy to treat people holistically within the NHS. Specialists operate within their own silos; each does excellent work, but they sometimes achieve less for their patients than they could achieve by working together.
When Bobath Scotland was first set up—the centre was then and is now the only one of its kind in Scotland—north-east children would travel to Glasgow for therapy. Clearly, that was not ideal and satellite outreach clinics were planned for the north-east—which, of course, I represent—but unfortunately, those clinics did not come about, and communication with the Glasgow centre gradually broke down over the years. Therefore, I was very pleased to learn from Stephanie Fraser that efforts are now under way again to strengthen links with therapists in the north-east and explore potential ways of working together.
The meetings between Bobath and therapists in Aberdeen and Elgin this summer were very productive. An introductory Bobath course took place in the north-east. It started with a study day in Aberdeen on “The Therapeutic Use of Play When Treating Children with Cerebral Palsy” and was followed by master classes in Aberdeen and Elgin that included the theory of eating and drinking, hand use and postural control. Demonstration treatments of children were identified by the local therapists.
That outreach work was supported financially by the R S Macdonald Charitable Trust and the MacRobert Trust. It was viewed a bit sceptically at first, but in fact it generated very positive feedback. The local Bobath-trained AHPs said that they thought that working together during the study days and master classes to solve problems and having the time to think and talk through clinical issues were very valuable and relevant to all their disciplines of occupational therapy, physiotherapy, and speech and language therapy. Unfortunately, time is limited for such multidisciplinary clinical management of cases, but with Bobath support and the possibility of involving classroom assistants in future outreach sessions, such collaborative management could be undertaken more widely. There was real enthusiasm for further outreach visits to both Aberdeen and Elgin next spring.
Bobath Scotland hopes that the success of that approach in the north-east could be used as a blueprint for other areas, allowing Bobath to give local therapists support and training to work together to help people with cerebral palsy throughout Scotland.
Clearly, in these straitened times, funding is a problem but, given the determination and enthusiasm of Stephanie Fraser and her colleagues, I believe that Bobath Scotland will ultimately achieve its goals with, I hope, help from the Scottish Government. Bobath Scotland is a very worthy organisation indeed and Patricia Ferguson deserves our thanks for introducing it to Parliament.
13:10
As others have done, I thank and pay tribute to Patricia Ferguson for bringing the motion to the chamber and for hosting Bobath Scotland’s visit to the Parliament ahead of this debate. A friend of mine was at the garden lobby reception, so I know that people who have children and other family members with cerebral palsy know about the awareness raising activities that are taking place right now and are grateful for them.
The number of people with cerebral palsy in Scotland has never been definitively recorded, but Capability Scotland is in the process of establishing a register for that purpose. Currently, it estimates that about 15,000 people in Scotland—approximately one in every 350 in society—have cerebral palsy.
Although cerebral palsy is not directly life-threatening, certain associated conditions, such as epilepsy and respiratory complications, can be. The primary debilitating effect is on movement and reflexes. The Bobath approach is particularly important, as it addresses the issues directly by focusing on improving motor skills, posture and speech, and helping people to live more independently. The therapy that is offered is highly flexible and tailored to the specific needs of the individual.
The main aim of Bobath therapy is to encourage the child and increase their ability to move and function in as normal a way as possible. Normal movements cannot be achieved if a child stays in a few positions and moves in a limited or disordered way. The intervention of Bobath therapy, which helps to change a child’s seemingly abnormal postures and movements, can lead to real progress. Bobath involves a transdisciplinary approach that includes physiotherapy, occupational therapy, and speech and language therapy that enable children to participate in daily activities.
In preparing for the debate, I read Bobath Scotland’s annual report and found the case of five-year-old Katie, which is a particularly good example of the Bobath approach. Because of underdevelopment in Katie’s leg and arm muscles, she tended to bottom shuffle around the floor, which led to further muscular problems in her hips. Following just two months of treatment at the Glasgow centre, the problems were alleviated and she was able to pull herself up using furniture. To some people, that might not seem a great deal, but that sort of thing can be revolutionary for families and can improve the quality of life in their homes.
I was pleased to meet with people from Bobath Scotland at the recent exhibition in Parliament and to sign their petition calling for equal access to Bobath treatment throughout Scotland. I was comfortable with that and relaxed about it. The Glasgow centre provides a world-class service and caters for people from throughout the country. It was established 17 years ago and so far has treated 700 children. Of course, their families have also benefited.
We have heard much about the provision of Bobath therapy across Scotland. It is right to draw that to the minister’s attention but, from my discussions with Bobath Scotland in the Parliament, I understand that the issue is not just about Bobath Scotland doing what it does so well as a centre of excellence; it is about skills transfer to teams throughout Scotland to allow allied health professionals in all of Scotland’s health boards to act appropriately and to provide such a holistic service.
We cannot and should not take away the independence of health boards to make clinical and care decisions, but we need a co-ordinated approach to ensure that we share best practice and systems across the country, and the minister has a role in ensuring that that happens. That is not just about supporting Bobath Scotland as an organisation but about ensuring that the various allied health professionals have the support and time that they need to care and treat.
I mentioned that we are not sure how many people in Scotland have cerebral palsy and that Capability Scotland is carrying out an exercise on that. To plan services we have to capture need, and to capture need we have to know the numbers. Therefore, anything that the Government can do to assist Capability Scotland in that work would be greatly appreciated.
I again thank Patricia Ferguson for bringing the motion to the Parliament.
13:15
I am delighted to speak in the debate, and I congratulate Patricia Ferguson on bringing the matter to the Parliament. I commend her for highlighting the personal experience of a family’s journey while they live with cerebral palsy.
As we know, Bobath Scotland provides support and assistance to children with cerebral palsy. The centre in Port Dundas is the only one of its kind in Scotland. I have had the pleasure of visiting the centre, and members can believe me when I say that it is very impressive. I recommend a visit to members who have not been there.
Bobath’s purpose is to help children and families to gain skills, through a holistic, hands-on approach that involves work with the whole family and the child’s external support network. Members have spoken far more eloquently than I can about the importance of the services that Bobath offers and the transformation in families that have received support, so I do not intend to repeat what they said. There is no question in my mind about the value of what Bobath Scotland does. The staff, parents and children are passionate about the service; indeed, we are all, rightly, passionate about the service and the organisation. We are constantly amazed at what the children can be helped to achieve.
Support for Bobath extends to my local area. Several of my constituents volunteer to organise and participate in the dragon boat race in Loch Lomond, which I think raised £40,000 this year. I applaud all their fundraising efforts.
That takes me neatly on to money. Patricia Ferguson was right to point out the scale of the task that Bobath undertakes and the scale of the funding challenge that it faces. Without a shadow of doubt, health boards’ resources are declining year on year. Referrals are still being made, but they are often not backed by a transfer of resource. There are health boards that do not refer at all, because they do not want to spend money and cannot afford to do so. It would be surprising if any organisation, let alone Bobath Scotland, could budget or plan effectively in such circumstances.
It is fundamentally wrong that a country the size of Scotland should have such a postcode lottery. We need to ask ourselves whether a child with cerebral palsy in Greater Glasgow and Clyde is somehow more deserving than a child with cerebral palsy in Highland, Grampian, Tayside or anywhere else. The answer, of course, is no.
I offer the minister a positive suggestion, which I hope that he will consider. Rather than just moan about the problem, let us try to do something a bit differently. Funding arrangements are in place for the Children’s Hospice Association Scotland. I know CHAS because Robin House in Balloch is in my constituency. CHAS takes children from across Scotland in very much the same way as Bobath Scotland does. A lead health board negotiates with all the other health boards, which means that CHAS is not chasing round 14 health boards with 14 different sets of funding criteria. It is a sensible and effective model, which I commend to the minister. It works for the NHS and it works beautifully for CHAS.
Will the minister consider whether the model could apply to Bobath Scotland? If he finds that it can do, I will thank him, as will lots of people, because he will be giving their kids access to Bobath’s services and the opportunity to have a better life.
13:18
I congratulate Patricia Ferguson on securing time for this important debate.
The debate is of particular interest to me because I had the pleasure of visiting the Bobath centre earlier this year to learn at first hand about the work that is done there. I was already aware of Bobath from my previous career as an occupational therapist. I confess that when I went to the centre I was a little surprised to find that my former maths teacher is a member of the board of Bobath Scotland—he was still looking for my homework. It was good to be able to meet the professionals and other staff in the centre.
Of course, it is essential that those with cerebral palsy and other conditions receive the appropriate therapeutic assessment, treatment and intervention that best suits and meets their needs. I recognise—I say this as a therapist rather than as a minister—the specialism that exists within the centre in Glasgow, but I also recognise that that has to be balanced against the fact that different models may be appropriate for different individuals in different circumstances.
That is to say that, in some instances, Bobath may not be the best approach for some individuals with cerebral palsy. Sometimes, Bobath will provide part of the answer along with other forms of therapeutic intervention. Very often, the evidence base will suggest that a range of therapeutic interventions may be needed in order to maximise and improve the independence and quality of life of individuals with conditions such as cerebral palsy. However, that is not to say that, in some instances, Bobath will not be the most appropriate intervention for some individuals.
In taking forward this type of approach, the challenge is not so much whether the centre should be in Glasgow or Edinburgh but how we ensure that we have a range of skill sets within the allied health professional workforce that therapists can make best use of when they are working with individual patients. That is a matter of giving people the skills and assets that they need so that they can deploy the best therapeutic intervention for the patient. That is why there is provision for therapists within NHS Scotland to receive training in Bobath so that they can use the technique with patients for whom it is appropriate.
Some work that has been taking place in the north-east is a very good example of partnership working with Bobath Scotland to expand and develop people’s skills so that they can discharge the Bobath therapeutic intervention in whichever setting is most appropriate to the individual patient. That means, therefore, that the centre in Glasgow is not the key; the issue is about the skill sets that the therapists can deploy in different settings at a local level.
The challenge going forward, in particular for Bobath Scotland, is how we can continue to scale up the work with AHP teams in different health board areas so that Bobath can work with and support people on an outreach basis to deliver Bobath interventions to patients in different areas as they see appropriate. The allied health professionals delivery plan provides a good opportunity for that.
I am acutely aware from my previous professional experience that AHPs have not been properly valued within our NHS in the way that they should have been and in the way that they can be. With the AHP delivery plan—the first of its type in the United Kingdom—I was determined to ensure that we recognise their work much more effectively. Part of that is about ensuring that boards recognise the role that AHPs can play. If we can ensure that that role is given a greater priority, there will be a greater opportunity for more young people and adults to be given access to services such as those provided by Bobath. Ultimately, however, the decision on the best and most appropriate therapeutic intervention for a given patient is for the therapists themselves in partnership with the patient.
No one would disagree with the minister’s comments on upscaling and increasing the availability of Bobath in other parts of Scotland, but at the end of the day what makes the difference for a child and their family is the sheer intensity of the experience of a range of therapies over an extended period of time. With the best will in the world, health boards may train up their therapists, but those therapists do not have the time to spend with the young people in question.
I recognise that it can be difficult to create in the NHS the same type of intensity that might be provided in a specialist centre, but my point is that the approach of having a single specialist centre in Scotland does not always serve people in other parts of Scotland who need to travel a considerable distance to get to it. The challenge is to have a model that allows the intensity of service to be delivered in the locations where individuals actually require it.
That is why it is important that Bobath Scotland engages with AHPs within individual territorial health boards, to look both at what skill sets AHPs need in order to take forward Bobath therapy for patients who may benefit from it and at how Bobath Scotland can support that. The work in the north-east is a good example of how that can be taken forward. I encourage Bobath Scotland to continue with the approach that it has taken in the north-east, engaging with boards—either with local boards or with professionals within individual board areas—to look at how it can scale up that approach and create some of the intensity that I acknowledge can be provided in a single specialist centre.
Giving a greater profile to AHPs and the role that they can play in helping to support individuals will assist in making sure that boards recognise that resource allocation in therapies such as Bobath is of value and can provide a real benefit to patients.
There is an opportunity for Bobath Scotland to work with our AHP teams within NHS Scotland and to look at how those teams can develop their skills so that they can provide the quality of services that we wish to see being provided across the country, in a way that allows people to receive therapeutic intervention in their own local area.
Jackie Baillie made a suggestion, and I am always open to looking at positive suggestions. However, to go back to the original point, it is not for Government to prescribe a particular type of therapeutic intervention, which Bobath is. The situation is different for CHAS, for example, because of the type of care and support that it provides. However, it is important that Bobath engages with AHP teams in territorial board areas and looks at how they can develop the service further. From the discussions that I had with Bobath Scotland, I have no doubt that it will be keen to look at taking that forward.
13:26
Meeting suspended.
14:30
On resuming—