TERTIARY CHILDREN'S
SERVICES FOR WALES: A REVIEW
Response from Welsh Association of ME & CFS Support
There is no mention
of ME and only 2 mentions of chronic fatigue in the document:
"The
need was raised for a South Wales specialised service for chronic fatigue"
(11.279)
"The
key conditions that require specialised treatment include:. Complex chronic
fatigue and chronic pain syndromes." (Appendix: Rheumatology)
It is unclear
whether either of these statements refer to the illness of ME, classified
as a neurological condition by the WHO (1), or CFS/ME, described in the English
CMO's report as demonstrating “immune, endocrine, musculoskeletal and
neurological abnormalities” (2)
Current
provision of services for ME/CFS – totally inadequate
Current services
to ME/CFS patients in Wales completely fail to meet any of the recommended
standards for care as laid out in chapter 3 point 27, as patients are not
able to access care fairly, effectively, responsively or in an integrated
manner.
There is only
one known service to children with fatigue in Wales - the Chronic Fatigue
Service for Children based at the Children’s Centre, UHW in Cardiff,
which appears to treat all kinds of CFS and ME as a psychiatric illness. The
Royal Liverpool, Birmingham and Bristol Children's hospitals are not known
to have a specialised ME/CFS service.
There are no specialised
services for young people with ME/CFS in Wales.
Specialised
services for ME/CFS – urgent need
There is an urgent
need for a specialised service to young people, not just in south Wales, but
in the WHOLE of Wales. The need is due to:
- The chronic
nature of ME/CFS (3), causing “profound, often prolonged, illness
and disability, and can have a very substantial impact on the individual and
the family.”(4)
- Rising incidence
- Thousands of children are estimated to sufferer from ME/CFS in Wales, although
incidence is rising as diagnosis improves. The commonest age of onset is 13-15,
but cases can occur as young as 5 or even 3. (5)
- Countrywide
shortage of expert knowledge -
There are few practitioners at any level in Wales with enough knowledge to
give appropriate care. Serious misdiagnosis has taken place at both primary
and secondary levels due to a presumption that child abuse and/or psychiatric
illness (in either the child or the parents) is the main or only problem present.
Functional Somatic Syndrome (FSS) is a common misdiagnosis. Children have
been misunderstood and prescribed inappropriate care, while others have been
ignored. Some are desperate enough to travel long distances to England at
their own expense, for diagnosis and appropriate treatment.
- Children
have special needs –co-existing conditions can be different to adults
eg eating disorders, psychological problems. Education is greatly affected
by this illness and a lot of family support is needed as young patients don’t
always look ill.
- Children
have a good chance of recovery - when diagnosed early and treated appropriately
they are much more likely than adults to return to an active and productive
life. (6)
- Constantly
developing body of knowledge –
The NHS Wales needs a specialist service to monitor the developments in understanding
of the illness and possible treatment options, in order to lead the way forward
in improving care in Wales.
Nature
of service needed for ME/CFS(7)
- Confirmation
of diagnosis –
in difficult cases or where no local expertise exists, ideally in local area.
- Treatment
plan advice – where there is no improvement in condition after following
standard management plan, or where no local expertise exists, ideally in local
area.
- Domiciliary
service – Care for the bed and house bound, in children's own homes,
by specialist staff (consultant, nurse, OT etc) who are linked to specialist
centres.
- Hospital
admission
– reserved for difficult diagnostic assessment and for dealing with severe
complications, serious recurrent illness, or other specific problems. However,
general children’s wards are not suitable for young ME/CFS sufferers
and domiciliary care is preferable if suitable quiet accommodation is unavailable.
- Support services
from a range of specialist services eg OTs, Physios, Disability Social Workers,
Counsellors, Pupil Support for education
Support to secondary care clinicians: telephone advice; diagnostic tests
conducted or interpreted
- Clinical
networks would be essential
- Outreach
services
to local hospitals
Commissioning
of specialised service for ME/CFS
If the SHSC is
to be responsible for commissioning specialised services and such services
are to be agreed by March 2003, then as a matter of urgency they should consult
with UK specialists and patient groups about the provision of a specialised
service to young ME/CFS patients and perhaps draw on the research into service
provision currently being done in the Scottish Executive:
Scottish Action
Group on CFS/ME
Dr Nigel Hunt,
GP, adviser to Tymes Trust
Dr ANP Speight Paediatrician, Univ. Hospital of North Durham
Dr David Lewis, recently retired community paediatrician from mid-Wales
WAMES (Welsh Association of ME & CFS Support)
Location
of care
- Special requirements
of young ME/CFS patients –
Travel can cause a delayed worsening of health for the more severely affected
sufferers. Quiet and the least amount of sensory stimulation is necessary
on a hospital visit to avoid causing relapse. This makes most major hospitals
unsuitable for ME/CFS patients unless access to specialised equipment is essential.
- All Wales
needs to have easy access to specialised care –
Strong networking is essential.
- UHW not the
best location for national children’s hospital -
We question the wisdom of squeezing a new children’s hospital into a
location that is already overcrowded and not meeting patient expectation.
Public transport is poor and parking difficult. The UHW already has problems
of access, even for local patients. It is not centrally located within the
country and not even central for South Wales.
- Need for
care within Wales -
A truly devolved health service should not aim to rely long term on English
hospitals such as those in Liverpool, Bristol and Birmingham. The aim should
be to provide the fullest provision within the country. It is unacceptable
to make ill people travel 3 hours+ for care.
Provision
of after care
- Inadequate
for children - The provision of after care for children with ME/CFS is
scant and extremely variable around the country, due to shortage of personnel
educated in the special characteristics and limitations of the illness. There
is a reluctance on the part of some GPs to accept patients who have ME/CFS
in their clinics, as they do not see themselves as qualified enough to treat
these patients. Home tuition is not always available and social services do
not always see the need to provide aids (stair lifts, wheelchairs, carers
etc) so lack of education and social contact can reduce quality of life and
affect recovery.
- Standard
age of referral – Children should be able to access all specialist
paediatric services until they are at least 18, with flexibility to extend
that in certain circumstances.
- Difficult
to refer to adult services
- There are no adult services in the majority of Wales in either specialised
or general medical clinics. Those there are, have long waiting lists. Therefore
there is also an urgent need for adult specialised services for the treatment
and management of ME/CFS in all areas of Wales.
- No monitoring
procedure -
There is no procedure for monitoring the effectiveness of previous treatment
programmes. It is unknown if children go on to relapse some years later.
Communications
- poor
There is a general
need for a considerable improvement in the communications with children and
parents with ME/CFS. The consistency of medical advice is poor and unreliable.
Advice to parents and children about advocacy and support groups is very poor
and in parts non-existent.
Training
& workforce planning
- Systematic
approach to training in ME/CFS urgently needed -
Not just for specialist staff, but also all staff who come into contact with
young ME/CFS patients need to have some understanding of the limitations of
the illness to avoid practices which make the young person more ill.
- Incentives
needed to attract staff to specialise in ME/CFS
– The speciality needs to be acknowledged and prioritised at the highest
level. Professional accreditation would be essential to encourage staff to
specialise and to raise standards of care. Flexible employment criteria and
retraining possibilities would be particularly important aids in finding staff
to set up such a service. Staff could be encouraged to add this speciality
to their career rather than completely changing directions.
Notes
1. WHO Classification
ICD-10
2. Report of
the CFS/ME Working Group, chapter 3, Introduction
3. ibid 6.1
4. ibid 6 intro
5. General Information
on ME in children , compiled by Jane Colby
6. Report of
the CFS/ME Working Group Annex 7 Children & young people
7. ibid Annex
7.4
(25th
June 2002)
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