Letter from Professor Stuart Tanner Department
of Health to the Chairman of the Committee (PC 18B)
1. HEALTH SELECT COMMITTEE INQUIRY INTO
PALLIATIVE CARE: PROVISION AND CO-ORDINATION OF PALLIATIVE CARE
FOR CHILDREN IN NORTH WEST AND NORTH EAST ENGLAND
At the hearing on 25 March the Department undertook
to provide the Committee with an overview of the organisations
involved in providing for children with life threatening illnesses
and how these collaborate to ensure services in the North West
and North East, including the mechanisms to facilitate working
together, and how the funding flow from the New Opportunities
Fund and other sources assists co-ordination.
I append at:
Annex A : a description of current services
in the North West—Cheshire and Merseyside, Greater Manchester
and Lancashire;
Annex B : a list of recently initiated
projects in the North West sponsored by the New Opportunities
Fund (NOF);
Annex C : a description of current services
in the North East;
Annex D : a list of NOF sponsored new
projects in the North East.
As we indicated at the hearing, with children's
services there are a number of agencies involved from an early
stage with the aim to provide a care pathway to fit individual
need. This will include support from the family's GP, health visitor,
local authority social care team and education authority—a
range of health and social care staff from physiotherapists and
occupational therapists to community paediatricians and social
workers.
Children in need of palliative care will usually
have multiple disabilities and there can be two or more affected
children where the illness is of hereditary nature eg early onset
Battens Disease, or Mucopolysaccharide diseases associated with
progressive mental and physical disability, and death in childhood.
Usually children with palliative care needs
are known from early onset of their condition, often from birth
or as the condition becomes manifest in early childhood. Throughout
childhood there will be adjustments in attitude and perception,
increasing cognitive development in many children and a growing
appreciation of choice with need for participation in education,
play and social activities common to all children. Increasingly,
effective interventions in symptom control also prolong life and
quality of life and will increase the need for services into adolescence
and early adulthood.
Although the attached annexes relate to the
North West and North East, the NOF initiative is UK wide and services
like the Diana Nurses, Macmillan, Sargent and PCT local children's
community nursing teams are a national asset. Services currently
provided have evolved over time to meet specific needs identified
locally.
The NOF initiatives are to support, build on
and develop links between existing services. This will promote
greater collaboration and clarity in care pathways. But there
is a need to focus on greater co-ordination of services and funding
streams. This is where the introduction of "Children's
Trusts" with the aim of giving better protection and
support to children by bringing together the various agencies
as one body, pooling funding and staff, sharing information and
adopting common approaches to assessment and joint training is
expected to make an impact (outside the context of children's
trusts within the Children's Bill).
The first 35 Children's Trusts were announced
last year. These "path finder" Children's Trusts will
be evaluated both locally and nationally over three years. The
evaluation research will be published. We expect the first results
in Autumn 2004. After that we expect a gradual increase in Children's
Trusts, for most areas to have Trusts by 2006, and all areas by
2008. It may be helpful to give specific examples of Children's
Trusts in the North West and North East.
There is a pathfinder Children's Trust in Trafford
focused on providing an Integrated Referral, Assessment and Tracking
(IRAT) process. Detailed procedures for the operation of the IRAT
process have been drafted and these are being tested by practitioners
using individual cases and input from children and parents.
In the North East, Barnsley Council and Primary
Care Trust are developing a Children's Trust with key health staff
and joint teams including social workers and staff dealing with
special educational needs in order to facilitate services being
built around the needs of individual children. Again children
and young people will be involved in the development of the Trust.
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