Home care: unbreakable bonds

Cerebral palsy is an umbrella term for conditions that affect muscle control and movement that develop as a result of brain injury incurred before, during or soon after birth. It affects about one child in every 400 born in the UK, according to charity Scope. Nationally, more children with cerebral palsy are making the transition to adult services with a complex disability. This is due to advances in neo-natal care and medical interventions, such as in spinal surgery and enteral feeding techniques. 

 

While cerebral palsy does not automatically result in a learning disability, evidence shows that two-thirds of people at the more complex end of the spectrum have cognitive impairment. Half of those who have milder progressions of the disorder will also have a learning disability, according to the National Institute for Health and Care Excellence (NICE).

 

‘Over the past 15 years, the numbers of children transitioning to the adult service with complex physical disabilities has increased year-on-year,’ says Sarah Bruce, lead clinician for the Lambeth, Lewisham and Southwark adults with learning disabilities physiotherapy service. The Guy’s and St Thomas’ NHS Trust (GSST) specialist learning disabilities health team sees people across the spectrum of learning disabilities. However, across the three south London boroughs, 60 per cent of people on the caseloads physios manage have complex physical disabilities and 40 per cent have deteriorating mobility issues or are at risk of falls, Ms Bruce explains.

 

NICE guidance on managing cerebral palsy emphasises optimising posture and movement to maintain function and prevent the development of secondary complications associated with physical disability. This, in turn, improves health outcomes and quality of life. Management pathways should be the same, regardless of whether someone has a learning disability or not

 

There is, however, plenty of evidence to show that people with learning disabilities face challenges in accessing mainstream health services. This is where specialist learning disability physiotherapy services, such as the GSTT team, can have a significant impact. ‘One of the main challenges for people with learning disabilities and their carers is difficulties with communication,’ says Ms Bruce, who sits on the National Executive Committee of Physiotherapists in Adults with Learning Disabilities (ACPPLD). ‘The service user’s ability to describe what’s wrong – if, say, they are in pain or in discomfort – is often limited. This can make it very difficult for those with complex physical disabilities, such as cerebral palsy, to navigate mainstream health services. And it can result in poor outcomes.’  

One of the main aims of the GSTT specialist learning disability team is to break down these barriers by either facilitating access to mainstream services or by developing pathways to specialist services to ensure their health needs are met, as not getting timely access to services can have serious consequences. To achieve these aims, some major changes were introduced to the GSTT model two years ago.

 

The first was to develop Mr Standley’s band 8a clinical specialist post, ‘with a remit to look at complex physical disability and deliver equity of service across the three boroughs’, says Ms Bruce. The aim was to ensure everybody with a complex physical disability has a comprehensive assessment using an expanded version of the postural management assessment developed by the Oxford Centre for Enablement. ‘From this we developed individualised management programmes,’ she adds. 

 

To support this, new pathways have been developed which incorporate direct access to mainstream and specialist acute services. For example, the team has developed a respiratory pathway with Lane Fox Specialist Respiratory Unit, and an integrated falls pathway with mainstream falls services locally. 

 

This model is in line with a NICE guideline that recommends that all people with cerebral palsy should have access to specialist assessment, intervention and screening for their mobility, posture, dysphagia and respiratory health. 

 

The team also has networks with paediatric services to strengthen how it identifies services users as they make the transition into the adult team. ‘We work very hard to ensure the person receives a smooth transition. We aim to directly transition people with complex physical disability from school, through college and into community services,’ says Ms Bruce. 

A key role of the physiotherapist in this field is to monitor, and maintain, the person’s physical presentation and associated secondary conditions. ‘We achieve this through review streams as part of our pathways and having an open referral system. For people with the most complex needs we are often act as a coordinator of a person’s care,’ Ms Bruce explains.

 

The upshot is that physiotherapists no longer need to keep people on their caseloads indefinitely, as was sometimes the case in the past. ‘Now, because we’ve developed pathways and review streams we can discharge somebody. We aim to keep caseloads manageable so we are able to respond quickly if something changes,’ says Ms Bruce.‘

 

Ms Bruce believes the team has been able to develop this model because of how the service is structured. ‘Having a learning disabilities physiotherapist at an 8b level who sits within a health trust, and has direct and close links with senior management and commissioners, has meant we have been able to influence change.’ fl 

When Frontline meets Leila Afful she is lying on her high-spec multi-positional bed in the kitchen, vocalising her awareness of strangers in her home. After Leila experienced brain damage during birth from a lack of oxygen, her parents, Nana and John, began noticing signs of cerebral palsy. ‘From a baby, she was unable to bend. I strapped her to my back like they do back home [in Ghana] so that she could learn to cling,’ says her mother.

 

Aged 61, Mrs Afful still carries 34-year-old Leila around their bungalow in Clapham, south London. ‘She is so attached to me, it’s unbreakable’, she says. Leila has spastic quadriplegia, along with severe scoliosis and contractures, respiratory infections and osteoporosis. She also has a severe learning disability.

 

Leila is fortunate to live in an area with a specialist physiotherapy service for adults with learning disabilities that works with complex physical disabilities. In 2102, she was referred to the Lambeth, Lewisham and Southwark service, run by Guy’s and St Thomas’ NHS trust, for a respiratory review.

 

‘I’ve worked with Leila for five years on and off to enhance her postural and respiratory management and I’ve built up a good understanding of the family dynamic,’ says David Standley, clinical specialist physiotherapist for learning disabilities and complex physical disabilities. ‘You can see how in tune Leila and her parents are,’ he adds, as Mrs Afful puts on her daughter’s favourite music to help her relax.

 

It’s this continuity of care that enabled the team to make one of the most transformative changes for Leila and her family, putting a multi-positional bed in place. ‘This came as a result of a joint dysphagia assessment by speech and language therapy and physiotherapy staff who observed the unique way Leila was supported to have a meal by her mum.’ explains Mr Standley.

 

‘Leila has a predominant extensor behaviour, which means she can only swallow effectively in a supine position, where she is able to use her extension. When she is flexed in a wheelchair she is at risk of dysphagia and becomes prone to chest infections.’ 

 

Now Leila can be fed by carers respite care there is a possibility that might be available to her parents. ‘Before [2012] we really struggled to get help with equipment or hospital appointments. The physio team has really helped us a lot,’ says Mr Afful.  

Earlier this year, NICE issued guidelines for young people (under 25s) with cerebral palsy and revised its guideline on spasticity in under 19s. Guidelines for adults with cerebral palsy are under consultation and are due to be published later this year. The Association of Paediatric Chartered Physiotherapists (APCP) and the Association of Chartered Physiotherapists for People with Learning Disabilities (ACPPLD) made recommendations about the role of physiotherapy within multidisciplinary care.

 

‘Early intervention and effective monitoring are two key areas that the APCP is pushing to improve outcomes for children with cerebral palsy,’ says Elizabeth Gray, APCP chair and children’s therapy lead at Chelsea and Westminster Hospitals NHS Trust. ‘If we can work with children before the age of two that will get the best outcomes for them longer term,’ she says. 

 

‘One of the biggest pieces of APCP work recently has been contributing to the NICE guidance titled Spasticity in under 19s: management. The guidance recognises that physiotherapy has to be part of cerebral palsy management,’ she adds.