The
health and social care regulator, the Care Quality Commission (CQC) has found
that young people who have physical disabilities or illnesses and so rely on
lots of therapies and treatments, are not always receiving the necessary care
and support when they move on to adult care services, despite guidance being
available for the last ten years.
The
process, called “transition”, can be a vulnerable time for young
people and their families as they stop receiving health services that they have
had since birth or a very young age – for example, to support their
mobility, breathing, swallowing, or pain – and move on to the equivalent
adult services, which can be structured and funded
differently.
As
part of its national report, which the Chief Inspector will launch at a closed
event this afternoon, CQC has spoken to people who have experience of the
transition process and reviewed a sample of services across the country to find
out what works well and what needs to improve.
The
regulator has found that there are problems with the transition process with
some children’s services stopping before their equivalent adult services
have started, that families are confused and distressed by the lack of
information and support given to them, and that generally, people’s
experiences of this process varies across England.
In
response, CQC has set four priorities for action:
- Commissioners and providers must listen to, involve and
learn from young people and their families about what they want from their
care
- Existing national guidance must be followed so that
young people are appropriately supported through their
transition
- GPs
should be more involved, and at an earlier stage, in planning for
transition
- Services must be tailored to meet the needs of young
people transferring from children’s health services and include extra
training for healthcare staff, such as community nurses, in caring for young
people
Professor Steve Field, Chief Inspector of General
Practice at the Care Quality Commission, said: “Despite plenty of
guidance being available on what good transition planning and commissioning
should look like, there continues to be a significant shortfall between policy
and practice. There is no excuse for people not receiving the care they
need.
"It is unacceptable that young people and their
families are being excluded from planning and decision-making about their care
and for them to be without essential services or equipment temporarily, while
arrangements are resolved.
"While our review found many committed
professionals who provide excellent care, there needs to be a system-wide
change, with commissioners and providers of health and social care working
together at every level.
"Planning and discussions with young people and
their families must start early, with clear funding responsibilities and
providers and commissioners must listen to what people want from their care. In
particular, general practice has a crucial role to play as the single service
that does not change when a young person becomes an adult. GPs should be more
involved in transition arrangements.
"Collectively, these priorities will stop young
people with complex physical health needs from falling between gaps of care and
not getting the support they need.”
As
part of CQC’s new approach to inspection which will begin from October,
CQC will investigate transition arrangements when it visits primary and
community healthcare services. Its findings will be reflected in the overall
rating – of Outstanding, Good, Requires Improvement, or Inadequate
– that CQC will award to services. These ratings will celebrate best
practice and hold providers to account to make improvements.
Minister of State for Care and Support Norman Lamb said:
“Young people with disabilities and long term health needs deserve the
best possible care which doesn’t reach a cliff edge once they reach 18.
The transition process needs to be better. I strongly support the clear
statement of principles from the CQC and I welcome the fact that with their new
more robust inspection regime, there will be consequences for providers in
terms of the rating they receive if these principles are not
followed.”
There are more than 40,000 people aged under-18 in
England who have complex physical health needs, caused by physical
disabilities, special education needs, or life-limiting or life-threatening
conditions. This covers over 300 conditions, such as cystic fibrosis, Duchenne
muscular dystrophy, rare genetic disorders, cerebral palsy, and multiple
disabilities following spinal cord or brain injuries.
Anna Bird, Head of Policy and Research at Scope, said:
“Transition can be a very stressful time for disabled young people and
their families.
"Many young disabled people find that their quality
of life can ‘nose-dive’ when they move from childhood services into
to the adult world. They struggle to get their health needs met – but
also to find work, to continue their education and to find a suitable place to
live. Without the right support a young person may end up isolated and not
making the most of their adult life.
"We need to see a system-wide change, which brings
together all the services that support disabled young people and their families
- from health and social care through to education, housing and employment. New
legislation means that now is the right time to make this
happen.”
Professor Gillian Leng, Deputy Chief Executive and
Director of Health and Social Care at NICE, said: “For many young people
on the cusp of adulthood, moving between health and social care services can be
a tumultuous and stressful time. NICE is developing practical guidance to
supplement existing policy and help health and social care practitioners tackle
this important issue.
"It’s vital that services work together and
involve young people and their families and carers so that they receive
consistent care and support. A poor transition between child and adult services
can have a profound and long-lasting negative impact on a person’s life,
potentially affecting education and employment opportunities, as well as
their long-term independence. The last thing we want is for young people to
fall between the gap in child and adult services and not get the support or
care they need.”
Ends Twitter hashtag (@CareQualityComm):
#lostintransition
For
media enquiries about the Care Quality Commission, please call the CQC press
office on 020 7448 9401 during office hours or out-of-hours on 07917 232 143.
For general enquiries, please call 03000 61 61 61.