Transcript: Bobath Scotland and World Cerebral Palsy Day

Podcast Episode: Bobath Scotland and World Cerebral Palsy Day

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MM - Michael McEwan
SF - Stephanie Fraser

Bobath Scotland is the only charity in Scotland dedicated to helping people with cerebral palsy, the most common cause of physical disability. With Cerebral Palsy Month coming up in October and World Cerebral Palsy Day on 7th October, Bobath Scotland Chief Executive Stephanie Fraser, talks to Michael McEwan about Bobath Therapy, the economics of running a charity, fundraising and training programmes for families, classroom assistants and young people. She is looking forward to their conference on 7th October which provides an opportunity for professionals, families and other charities to share knowledge and evidence.

MM Can you tell us a wee bit more about cerebral palsy?

SF Absolutely. Cerebral palsy is classed as … it’s any injury to the infant brain. … it’s a brain injury that happens either pre-birth, during birth or immediately after birth. And it’s an umbrella term and that’s very important because cerebral palsy is different for everyone. The brain injury will remain the same, it won’t get any worse, it won’t get any better, but what you can achieve can be helped through therapy and resistance and all sorts of things. The most important thing about cerebral palsy it will always affect movement, but it might also have other complications. So people might have visual complications or cognitive complications or some people experience pain, but again it’s different for everyone. The important thing about it being an injury to the infant brain, is that as an infant you haven’t walked or talked or eaten food or developed in any way, so therefore a normal pattern of development isn’t possible. And that’s what causes the movement issues.

MM And Bobath Scotland is here to support people with cerebral palsy - the only charity I must say in Scotland specifically for people with cerebral palsy - a bit like myself - I’ve got cerebral palsy as well. So what kind of support does Bobath Scotland provide for families and individuals?

SF Well what essentially we do is we provide Bobath therapy. That’s why we’re called Bobath. And Bobath therapy was developed way back in the 40’s after the war and it named after a couple - Dr and Mrs Bobath. Dr and Mrs Bobath were the first people really to say ‘fine, the brain injury may not change but that doesn’t mean that you just give up.’ What you can achieve and what you can achieve functionally can be made better, with a combination of physiotherapy, speech and language therapy and occupational therapy. So we provide that therapy here. It’s not a magic wand, it’s not a special bullet, it’s not a list of 10 exercises that you just go off and do. It is absolutely, clinically looking at someone and finding out what they need to achieve in life. You know, what’s important to them? For some people it might be getting dressed, but for other people it might be safe hoisting or it might be, be able to do their own hair or it might be you know, to eat with a spoon rather than with a tube. It’s different for everyone and our therapists work on something very specific with families, with adults to achieve a functional goal.

MM Tell us about a bit the Bobath Scotland. You’re independent, so you’ve got to raise money, … income for the year.

SF Yeah, we do and when we started - we started 21 years ago and we were started by a group of parents who didn’t want to have to take children to London for this therapy. And when they started they were very clever actually, because they decided there’s no point just setting ourselves up in Scotland and hoping people turn up. So they very much began Bobath Scotland in conjunction with the NHS. And the NHS have said to me actually, that the reason they like Bobath is because it’s how they would like to work. If they had the time, the space and the case load to be able to have that intensive intervention they would like to work that way. And a lot of NHS therapists have an element of Bobath training. And that’s why we haven’t changed the name, because in the medical world to say that you are Bobath trained means something. It means that you are an expert in the management of cerebral palsy. But life has moved on and Bobath moves on and the NHS moves on and everybody moves on and so what’s happened over the 21 years is that, yes we were set up in conjunction and with the full backing really of the NHS and about 80% of our original funding would come from the NHS, and that’s completely changed. So now we have to raise about 85% of everything that we do across Scotland, ourselves.

MM We’ll come on to fundraising in a minute. I just want to speak about your training - cos you go out and deliver different sessions. What do you…?

SF Well even though we have to raise 85% of our funds ourselves, it’s still very important for us to work in partnership with the community and to work in partnership with what’s out there. And part of that is training health professionals - so therapists, trainee doctors, but also educational professionals - so classroom assistants, carers and actually families as well, into how manage cerebral palsy and to understand it. You know for example we’ve had people come to us who are concerned about challenging behaviour. And actually, it’s just that they’re not understanding what the person that they’re dealing with is trying to communicate with them. And giving people strategies to cope with that is very important. So we run training programmes for all those groups.

So you know - in the October holidays for example - we have classroom assistant courses, because often we have classroom assistants that come in here and they’re in mainstream school, and they’ve never had a child with cerebral palsy, and they don’t know what to do. And we run a programme throughout the year for therapists. We’ve just developed something with Glasgow and Lanarkshire about training Band 5 therapists - the new therapists that are coming in. Which is fantastic, because if it’s part of their early training they’re understanding about the implications for people with Cerebral Palsy - then I think that’s only a good thing. So it’s very, very important to us to sort of work with what’s there, and try and raise the profile of people with cerebral palsy and the understanding of those that are there to help them.

MM Do you feel as though it’s raising the profile of Bobath as well, because as you and I know not many people know about Bobath?

SF No, but we’re a very small set up. We only have 15 people in our centre in Glasgow and our aim is to help everybody in Scotland with cerebral palsy. So, clearly we have a capacity issue at this point. But we have a big ambition. As you said we are the only charity dedicated to helping people with cerebral palsy. That’s come about I think by default, because there used to be other larger charities but they seem to have diversified into all physical disability or something ….or taken a different path. Or there are charities out there who are helping people with cerebral palsy, but they don’t quite realise it, you know, it’s just part of people that they are helping. So, yes - to get back to your question, yes it is raising the profile of Bobath, but actually our aim and our board is very clear about our strategic aim - our strategic aim is to improve the lives of people in Scotland with CP, not just to promote Bobath. So things like our conference, things like you know the way we engage with government or health boards or whatever, is quite often about supporting them to achieve that. And where Bobath fits in is where…..that’s my job to kind of make sure happens. If the services were provided across Scotland and people could have access to therapy from cradle to grave and Bobath didn’t need to exist as a separate organisation that would be marvellous.

MM Let’s go back to speak about fundraising. Cos obviously you’ve got to do fundraising all yourself to keep Bobath going year to year. How hard is it to organise events - or how easy is it?

SF Well fundraising is hard, but what we’ve tried to do here is be as strategic as possible. A few years ago when we moved into our new building we did manage to…… capital fundraising for stuff is slightly easier I always thing, cos people are quite keen to give you stuff and put their name on it and have their badge all over it. But we don’t need stuff, we’ve got our centre and we want to actually get out around Scotland. What we need to raise funds for is actually our therapists salaries. And that’s a very hard ask. And they are employed under the same terms as NHS therapists, so I actually have no say in their salaries. It’s set by the government - which is great for us cos it means people can come and go from the NHS - come and work for us and go back again without any sort of break in their career so to speak.

But fundraising for those kind of ongoing costs is really, really hard. And what we’ve tried to do is to look at our work strategically and …..our aim is to help people from cradle to grave, and we have a very good history and reputation of helping children, and we have very good relationships with paediatric services and schools. And recently in 2012 we started an adult service and that’s been very interesting as it develops because adults have very different needs clearly to children and don’t necessarily need the intensive support. So thinking about - well what products - I suppose I’m thinking about it in a rather commercial way, but if we think about our services as products, and then we can go and sell those products to those that might pay for them, i.e. trusts, foundation - companies might sponsor them or whatever it is - that’s what we’ve been trying to do. And I’m a firm believer that if you can explain the need - if there’s a real need and you can articulate that, then somehow, somewhere you will find someone to fund it.

But we have had to be very clear about - you know, if somebody rings up and wants to offer use a minibus - we don’t need a minibus. And you know so sometimes you’re thinking ‘well they want to offer us a 20K minibus’ - pretty tough to say no, but you know, we’ve been very clear that we don’t want to be distracted - we’ve got to stick to the aims of what we want to achieve. Events form a small part of our fundraising. If we have to raise…..it’s probably about 15% of our income comes from events. They’re very hard, especially for a small charity like us, because it’s really hard to get people to come. If they don’t know about Bobath, they’re just like ‘what’, you know - why should we go? Whereas something like the MacMillan coffee morning - everybody knows about MacMillan and they get it - whereas we have to explain to people, which is so frustrating. Cos I mean cerebral palsy is the most common cause of physical disability, so it frustrates me daily that so little is actually known about it.

However, it is important for us to do event, partly because we need to tell people what we do and explain to people why we’re here. And so there’s PR element to events that’s very, very important. And it also allows us - I mean for example we had a Ball last March which Francesca Martinez came to, who’s wonderful. I mean I fully admit to stalking her on Twitter, because I think she’s fantastic. And she came to perform at the Ball, but it was just perfect because we also managed to have…..you know she was interviewed, we were able to write articles about her and highlight the need for adults to have support. And that was a really important strategic aim for us at that time. So not only was it great - she came to the Ball - not only was she brilliant and funny and a lovely person, she managed to explain to all the people that had bought tickets to the Ball - you know, just telling her story tells people - here you go, this is what living with CP daily is like, in a lovely funny way. And we were able to have some fantastic PR because she agreed to be interview by people. So events are important for other reasons than just fundraising.

MM October is a big month, but a busy month as well. You’ve got your awareness month and also you’ve got World Cerebral Palsy Day - I think that’s on the 7th of October. And you’ve got your conference coming up as well, so give us a wee insight into this.

SF Well, it is a very busy month. And I’m looking forward to it. World Cerebral Palsy Day was something that actually initiated in Australia and it has been taken on board by a great many countries and we’ve been part of it for about the last - this will be our 4th year. And I suppose you know all charities will look for hooks to get the name out there and to persuade people to think of them. And so this was a good hook for us. And I’m a great believer in - if other people are doing good stuff, let’s jump on the bandwagon. And actually there was some good stuff coming out of Australia. They produced some really good posters and things like that and information, so we’ve used that.

We were very lucky that Digby Brown Solicitors have sponsored our conference or supported our conference. So, we can put it on at no cost to us because of that and it allows us to bring the cerebral palsy world in Scotland together. And that’s really important because there are so many people out there, as I’ve said before that are helping people with CP but maybe not realise it. So for example the riding for the disabled - there’s a great cross over between our clients and their clients, but I don’t think they’ve really thought about that before.

A lot of our families wanted a space to meet each other or to discover what was out there for their children. Or what might happen next - you know, what was grown up life going to be like for their child?

And there was a will amongst professionals - amongst healthcare professionals, to understand what the latest research was about or what the latest management techniques may or may not be, and learn from each other. So Digby Brown have allowed us, by supporting this conference, to create that space. I’m really excited this month, October - World Cerebral Palsy Day is always the 1st Wednesday of October and we have got the minister responsible, Jamie Hepburn, coming to speak at the conference. Now that’s fantastic because that keeps CP up on his agenda. And hopefully that means that the change that we’re campaigning for, for a pathway for adults you know - it’s another opportunity to say ‘hey - here’s what we want to do, please support us, minister.’

We’ve also got going on in the month - I mean we do a lot with schools - so we often have volunteers that go out and speak to schools. So assemblies and things like that and because it’s awareness month it gives schools a reason to say ‘oh well we’ll do a dress as you please day for Bobath.’ So that’s fantastic, because not only is that potentially fundraising for us, but it’s also awareness amongst children and I just think it’s so important for children to understand conditions like cerebral palsy. So that is a big push during October and then we’ve got some funding from Children in Need for the 1st time - which is very exciting - to run during the October holidays a Bobath buddies camp. So many children were in mainstream school that they were perhaps the only person in their school with CP and it can sometimes be a lonely place. So, it was allowing us…we developed groups for teenagers and younger adults and we were finding that the younger children were saying ‘well why can’t we have a group?’

MM How can people find out about the brilliant work that you do at the Bobath Centre?

SF I always just encourage people - please ring us up. If you have CP or you know someone with CP, or you’re dealing with anything that’s remotely CP related, please just ring us up. Our telephone number is 0141 352 5000 and we’re here Monday to Friday, 9 - 5. And if we’re not here, please send us an e-mail or a Facebook message or leave a message on our answer machine and someone will get back to you. A phone call is free. And we are delighted to help in any way we can. If we can find a way of funding something, you know - if there’s a need - somebody has a problem and we can help, we never want to turn anyone away because of ability to pay. We help people on the basis of need and then we go off and try and find out how we can fund them. Please phone us.

MM OK, Thanks for your time and Good Luck with your awareness month and the conference in October.

SF Thank you very much.

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