No one really wants to talk about money but it’s a fact that good care and innovative therapy need sustainable ways of funding. In this post we are talking to a parent of a young magician on our Breathe Magic Intensive Therapy Camps who struggled in the funding process and we ask our Clinical Lead Rebecca Johnson how Breathe is addressing the issue when working within clinical commissioning structures.
“Samiya’s right hand paralysis was having a profound impact on her ability to carry out daily living tasks. The older she got, the more noticeable the impact became, to the point where she was mentally and socially retreating”, Shiwli Begum says.
I was desperately looking for help.
Shiwli is the mother of 12-yr old Samiya who took part in the camp last year. “I wanted some intervention before my daughter started secondary school. I eventually found Physical Disability Support Services (PDSS) and Samiya’s support worker instantly got down to reviewing her needs. One day, she emailed me an invitation the Breathe Magic Taster session in cooperation with Hemichat in Walsall in November 2015.”
When the parents find out about our work, there are two ways for a young person with hemiplegia to get one of the coveted places on our camps, if they cannot fund the place themselves. If they contact Breathe directly, we work closely with them to make a case to their local NHS Clinical Commissioning Group (CCG) and healthcare teams. However, this is a long and bureaucratic process that not every family might be able to see through to the end, and that even despite persistence might end up unsuccessful. “Before we could get onto the camp, we faced massive challenges over funding”, Shiwli says. And the family are not alone in their struggle. At another Hemichat taster in Walsall in January of this year, we heard many cases like Samiya’s.
However, it’s not just the parents who need to come to grips with finding the right sort of treatment and support for their children. Throughout the years we have also heard from many CCGs about how the demand for provision of services for children with hemiplegia outstrips what the health teams can deliver. Instead of granting funding for one individual case (through an Individual Funding Request (IFR), the CCGs tell us that they are considering to go back and restructure their overall policy for provision. The health teams work according to a framework called NICE guidelines within which they are relatively flexible to structure the provision of their services in regards to local demands.
“This means that one local team might be able to secure individual funding for intensive therapy via their CCG on a case-by-case application system, while another, just a few miles down the road doesn’t”, says Rebecca Johnson, Breathe Clinical Lead.
To the parents this can sometimes feel like post code lottery.
“What we’re doing from our side to address this, is seeking an exchange and work with with the local health teams and help them reflect on how they use evidence based practice and how we can navigate the funding challenges together.”
The other way, then, to become a young magician, is to get a direct health referral from the children’s health professional on to our programme, but the funding situation remains the same as above. For a health referral to happen more often, Breathe is increasing its efforts to get Clinical Commissioning Groups to recognise the benefit of our programmes. Part of being awarded the NHS England Innovation Award was our commitment to bringing our Breathe Magic Intensive Therapy Programme to other regions in our country.
In the last few years, we have had increased interest from families in the Midlands, such as Samiya’s who is from Handsworth. Her mother Shiwli recalls the awe she felt when she saw her child come back out of her shell after only a few days at camp. “Third day in… Samiya was tying her hair! The first time I saw her do this was the most amazing feeling since I had received the initial diagnosis. I made her undo and tie her hair several times and just watched on. At that moment I knew that all the obstacles I had gone through to get Samiya to camp became insignificant.”
Shiwli’s experience really helped us dig deep and after months of work we identified relevant Occupational Therapy teams in the area. We decided to go the direct route and speak to the health professionals themselves at Breathe and invited them to an information event held in Evesham, Worcestershire. There, we highlighted not only the therapeutic benefits of our programme and how they work within the NICE guidelines but also talked about the training opportunities that Breathe has to offer to these teams. We have previously trialled such an approach, ‘Breathe as an Integrated Therapy Pathway’, with the health team in Wandsworth – to great success.
Breathe Magic Intensive Therapy Programme has now become an integrated part of the Hemiplegia pathway within the Wandsworth CCG Physiotherapy and Occupational Therapy department. Such sustained and integrated collaborations can maximise the therapy capacity of the team. Local therapists identify those cases who would benefit from the programme. Then, following a screening process by Breathe, joint consideration is given to young persons clinical goals for the following 12 months to ensure the intervention is timely, and most effective, and in relation to their ongoing medical and therapeutic care. Not only is this collaboration and access to intensive therapy beneficial for the child and family but this mutual partnership provides continuing professional development opportunities and knowledge exchange that promotes local patients get the right treatment at the right time in their health journey.
Clinical Lead Rebecca Johnson and Samiya.
When we connected with the health teams in the Midlands, we were delighted to see the great interest in innovative forms of therapy. We spoke to teams from Birmingham, Warwickhshire, Worcestershire, Herefordshire, Gloucestershire, Solihull, Sandwell and Dudley, and Telford. Because we’ve had direct interest from several of the teams, we can finally announce that this summer the first Breathe Magic Intensive Therapy Camp will happen in the Midlands, and that’s in addition to our regular London one! There will be more details shortly – so do get in touch if you are interested in signing up your child or if you’re a relevant health professional. Rebecca Johnson says that Breathe is already linking into the local health practitioner community: “We’re working with Coventry University and Worcester University and their Occupational Therapy departments to recruit committed magic trainers who are interested in a voluntary or placement opportunity within a paediatric setting.”
Shiwli puts her finger exactly on why an integrated approach to referral is so important to us: “We formed a support network and met different people with similar experiences yet with different ideas on overcoming difficulties. We have all learned to adapt, encourage and support our children”, she says. Instead of treating children as cases, Breathe works towards bringing health teams, parents and therapists together to form mutually supportive interest groups that inspire kindness and awe. After all, that’s what magic should be all about.
Dates for the Breathe Intensive Therapy Camp for Young People with Hemiplegia 2017:
London: 31 July – 11 August
Midlands: August 21- 1 September