9th May 2011

Submission to The NHS Future Forum

from The Children’s Trust, Tadworth

1. About The Children’s Trust, Tadworth

1.1. The Children’s Trust, Tadworth is a national charity providing specialist care,
education, therapy and rehabilitation to children with multiple disabilities,
complex health needs and acquired brain injury.

1.2. Our services include residential rehabilitation for children with acquired brain
injury (ABI); community-based services for children and young people with
ABI; a residential school for pupils with profound and multiple learning
difficulties (PMLD) and complex health needs; residential and community-
based short breaks (respite care); transitional care between hospital and
home for technology-dependent children; palliative care and continuing
residential care. All of these services are wholly or partly funded by Primary
Care Trusts.

1.3. Our combination of services gives us a unique perspective on the Health and
Social Care Bill’s implications for severely disabled children and their
families.

2. Summary
2.1. Children with low-incidence, high-cost needs will pose a significant challenge
to the new health system set out in the Bill. We are concerned that GP
consortia may not have the expertise or purchasing power to commission
specialist services for this population effectively.

2.2. More must be done to ensure the reforms take account of this vulnerable
group of children, who are at risk of missing out on the specialist services
they need. It is our suggestion that this is done by giving commissioning
responsibility for such services to the NHS Commissioning Board so that
these services can be commissioned nationally or regionally.

2.3. We have included in the Appendix a handful of case studies of children with
whom we have recently worked in order to highlight how challenging such
cases would be for the new health system.

3. About the children we work with

3.1. The children and young people to whom we provide services are amongst
the most severely disabled in the UK. Many of them have profound learning
disabilities and need to be supported in every aspect of their daily living.
 They are mostly unable to walk or talk and many depend on technology to
keep them alive, through gastrostomies, tracheostomies or artificial
ventilation, requiring round-the-clock nursing care. Some have rare and
complex genetic conditions like Rett syndrome or Batten disease. Most use
a wheelchair and may also need other items of special equipment to help
manage their posture and prevent deformity or aid mobility and
communication. Others may appear to be physically able, but have subtle
yet highly significant problems with their learning and behaviour as a result
of a ‘hidden’ brain injury.

3.2. Adequately meeting these children’s needs is unavoidably expensive and

represents an enormous challenge to health, education and other statutory
agencies. At the same time, improved medical interventions mean this
population is growing.

4. Our concerns
4.1. We have deep concerns that GP consortia will not have the clinical or
management expertise to adequately commission the specialist services
required by children and young people with severe disabilities and complex
health needs. These services are expensive and even in the current system
we have often faced great resistance by local PCTs to meeting such costs,
despite the recommendation of paediatricians. In the past year alone the
time taken by PCTs to agree funding for intensive therapeutic rehabilitation
after a brain injury has increased in most cases from around 60 to 90 days.
We would expect these difficulties to be exacerbated under a system of GP
commissioning. GP consortia will have even less commissioning expertise
than PCTs in complex cases and will be less able to cope with spikes in
financial demand brought about by the incidence of very complex paediatric
needs in their area. We fear this will not only lead to children being denied
access to vital services, but also pose a threat to highly specialist, national
services such as our ours.

4.2. Many of the children we see at The Children’s Trust have very unusual
conditions. Statistically the average GP is unlikely to see a child with one of
these particular conditions in an entire career, so to put the commissioning of
services for all these children into the hands of GP consortia would present
them with quite unfamiliar challenges. Professor Sir Ian Kennedy’s report 1
has already criticised the lack of general paediatrics training that GPs
receive. This is particularly true for disabled children, where GPs are
sometimes not involved in care and treatment at all. A child with a serious
disability will be in the hands of a community paediatrician or a paediatric

1
Getting it right for children and young people : Overcoming cultural barriers in the NHS so as to meet
their needs, Professor Sir Ian Kennedy, Crown Copyright 2010
 neurologist and other specialists either from birth or from the moment they
are admitted to hospital after an accident or illness. Few GPs will have a
good understanding of the range of needs of such children, nor of the types
of specialist services available to meet them.

4.3. We have included in the Appendix a few recent case studies to illustrate how
challenging children with severe disabilities and complex health needs will
be for the new health system. It is unclear how GP consortia will respond to
such highly complex cases, with which they will be unfamiliar, which do not
follow the normal pathway of acute care and which may involve a treatment
programme costing upwards of £300,000 a year commissioned from outside
of the NHS.

4.4. The challenge is also characterised by a constantly changing picture of

need. As advances are made in acute medical treatment, so we are faced
with a small but growing population of ‘new survivors’, children who not long
ago would not have survived the removal of a brain tumour, or very early
pre-term birth or an attack of meningitis. Such advances are on the whole
very positive for children and families but they have long term
consequences. Turning the clock back would be unacceptable. One of the
marks of a civilised, highly developed society is a positive attitude to and
ability to care well for its weakest members. It would be a poor outcome if
one of the unintended consequences of NHS reform was to see the UK
falling behind standards of care available to disabled children in Canada,
Australia, the USA and elsewhere in Western Europe.

4.5. Disabled children with complex health needs could miss out on vital
specialist services unless structures are included in the health reforms for
national or regional commissioning for this population. Pooling resources
and concentrating commissioning expertise is the most effective way of
ensuring that low-incidence, high-cost needs are met. The new NHS
Commissioning Board (NHSCB) represents a powerful mechanism by which
this can happen. While the Bill already places responsibility on the NHSCB
for commissioning the specialist services identified in the National Definitions
Set, there are other services for children with low-incidence, high-cost needs
which fall outside the National Definitions Set parameters.

4.6. The Bill provides scope for alternative commissioning arrangements for
patients with complex needs (with consortia able to collaborate with other
consortia, or appoint lead consortia, or even to pool resources with the
NHSCB), but we fear that these measures will be insufficient. While we
agree with an approach that uses pooled resources nationally or regionally, it
is risky to leave these arrangements to the discretion of individual consortia.
They would first need to recognise where such arrangements are necessary
 (and we have already stated above our concerns about the limitations to GP
consortia’s commissioning expertise in complex cases) and then be
prepared to submit a proportion of their budget to be spent on their behalf by
a third party, be that the NHSCB, a lead consortium or another body – we
cannot see this happening uniformly across the country without more formal
structures being in place.

4.7. The Children’s Trust has a successful history of raising voluntary funds for
investment in modern facilities and capital improvements for services whose
core revenue funding is provided by the state. We would respond
enthusiastically to the challenge of raising funds to invest in an expansion of
our services in the North of England, if only we could be given some
reasonable confidence about the reliability of commissioning and a stable
basis for partnership with the NHS. We have no doubt that the need is there.

4.8. Lastly, we would like to stress the importance of statutory agencies adopting
a holistic approach to disabled children and working closely together to meet
their needs. We welcome the creation of Health and Wellbeing Boards,
which have the potential to deliver better outcomes for children and families
and in many cases deliver significant savings to the taxpayer.

4.9. Disabled children often have multiple needs that may require the
engagement of diverse agencies, including education, health, mental health,
housing and youth justice. We support the recommendation of the Royal
College of Paediatrics and Child Health that the membership of Health &
Wellbeing Boards should include a paediatrician, but further recommend that
they have the power to co-opt representation from any of the above
agencies. A co-ordinated approach from these agencies can provide
effective support to disabled children and their families and has the potential
to prevent delays and unnecessary costs from arising. The Bill as it stands
only requires Health and Wellbeing Boards to “encourage” the involvement
of providers of “health-related services” (Section 179, subsection 3). The Bill
should be amended to ensure these services encompass the broad group of
agencies that disabled children encounter and should mandate the
involvement of these agencies in Health and Wellbeing Boards.

5. Contact information
Andrew Ross, Chief Executive
The Children’s Trust, Tadworth
Tadworth Court, Tadworth, Surrey KT20 5RU
Tel: 01737 365040
Email: aross@thechildrenstrust.org.uk
Appendix – case studies

The names of the children in the following case studies have been changed.

Case study 1: “Gemma”

Gemma was diagnosed with a brain tumour just before her ninth birthday. While
surgery and chemotherapy were successful in removing the tumour and preventing
its regrowth, Gemma was left with significant neurological damage affecting all
aspects of her life. One year after surgery she continued to have a range of
significant and complex disabilities, including being unable to walk unaided and
severe speech difficulties. Furthermore, these impairments had a major impact on
her psychological wellbeing.

For 12 months Gemma’s local PCT provided only a light programme of community-
based therapies while she struggled to reintegrate at school – one hour of
physiotherapy and one hour of hydrotherapy per week, 30 minutes of occupational
therapy per week during term time and one session of speech and language therapy
every nine weeks – but it was clear to her consultants and parents that this was not
meeting her rehabilitation needs.

With the PCT unable directly to provide the level of intensive neuro-rehabilitation
Gemma needed to reach her full potential, her lead consultant referred her to The
Children’s Trust at Tadworth for a period of intensive residential rehabilitation. A 12-
week programme at The Children’s Trust includes expert medical care and a range
of daily therapies delivered by brain injury specialists (equivalent to more than a
year’s worth of therapies under Gemma’s community timetable) at a total cost of just
over £70,000. However, the PCT initially refused the funding application.

Gemma’s parents were forced to take their PCT to appeal, leading to months of
delays in Gemma receiving the treatment that her consultants had agreed was vital
to her recovery. Eventually the PCT agreed to fund her placement at The Children’s
Trust.

Gemma made significant progress at The Children’s Trust, evidenced by clinically

validated outcomes measures. She regained significant physical and communication
skills and, alongside her parents, learned long-term strategies to cope with her
remaining disabilities.

Case study 2: “Peter”

Peter was diagnosed with a rare brain deformity while still in his mother’s womb.
Doctors did not expect him to survive the pregnancy or birth, but a few days after he
was born it became clear that he would live longer than his original prognosis
suggested, though still for only a matter of months. Peter’s severe disabilities and
complex medical needs meant that he could not be looked after at home. At the age
of three months he was referred for continuing/palliative care at The Children’s Trust,
funded by his family’s local PCT.

Peter’s tailored package of care focused on providing a child-friendly environment

that was able to cope with his complex needs, in particular specialist nursing care
with expertise in pain management, where his family could spend time with him and
where his end-of-life needs could be met. He received a range of therapies in
addition to nursing care.

Peter’s condition deteriorated as anticipated and his care package became end-of-
life care. His family was supported to be with him through his last few days and he
died peacefully in his parents’ arms aged eight months.

Case study 3: “Adam” / The School for Profound Education

The Children’s Trust’s services include The School for Profound Education, a non-
maintained residential special school for pupils with profound and multiple learning
difficulties (PMLD) and additional complex health needs. It is one of the few schools
in the UK that can provide specialist education, care and therapy with on-site
medical cover for pupils with these relatively rare needs. The school’s 40 pupils are
drawn from 33 different local authorities.

The school is consistently rated ‘outstanding’ by Ofsted, not least for its ability to
meet the complex health needs of its pupils (which include tube-feeding, severe
epilepsy and 24-hour artificial ventilation) and to integrate this care with therapies
and education in a holistic approach that gives each pupil the best chance of a life
full of learning and stimulation.

This holistic approach to a child’s education, health and social care needs is likely to
be better served by a national or regional commissioning arrangement than by local
GP consortia. The pupils’ complex health needs mean that most residential
placements are funded by a combination of education, health and social care
funding. In such cases the pupil’s local PCT pays for a third of the cost of their
placement, with a typical residential place totalling around £180,000 per year.
Furthermore, the eight students aged 19 or over accessing the school’s further
education college are fully funded by their PCTs.

A high level of medical and therapy input is not only essential for these pupils to be
able to have any kind of educational experience or indeed quality of life, they also
prevent the longer-term costs associated with allowing pupils’ health to deteriorate.

Adam is typical of the learners at The School for Profound Education. Now aged 21
he has been attending the school since 2001 and now accesses the school’s further
education college. Adam’s severe cerebral palsy has had a huge impact on his
health. The very high tension of his muscles has caused significant spinal curvature,
which puts pressure on his vital organs and has led to frequent infections and
digestive problems in addition to severe discomfort.

Adam’s spinal curvature has been carefully managed by the school’s specialists over
the years, culminating in a joint decision made between his parents, the school’s
nursing, medical and physiotherapy staff and his orthopaedic consultant for him to
have a major spinal fusion operation three years ago. Since then, Adam’s health and
wellbeing have improved markedly, though he is still carefully monitored and follows
24-hour therapy programmes. He is now fully able to participate in and enjoy the
education, activities and outings on offer and can eat orally again, which allows him
to enjoy family meals on his weekends at home.

Case study 4: “Ravi”

Seventeen year old Ravi suffered a severe acquired brain injury in a road accident in
August last year. He spent several months in hospital until his medical condition
stabilised and was then referred for residential rehabilitation at The Children’s Trust,
where he has been staying since November. He is currently funded by his PCT to
stay at the Trust at a cost of around £850 per day until the end of June 2011.

Ravi’s needs are significant and complex. He is slowly regaining the ability to
communicate and eat orally again. He remains unable to walk unsupported and uses
a wheelchair for most of the day, though he is gradually making significant progress
in his physiotherapy sessions. He is dependent on others for the majority of his
personal care needs.

Ravi’s mother has been staying with him throughout his stay at the Trust and has
played an important role in his rehabilitation. Not only has she provided emotional
support and motivation, but she has been preparing for his return home by
participating in our brain injury education sessions for parents and learning how to
care for him and continue his therapy exercises at home. Ravi is due to start
spending weekends at home shortly. It will be the first time he has been home since
his accident.