Select Committee on Health Minutes of Evidence


Annex C:

PALLIATIVE CARE SERVICES IN THE NORTH EAST

NORTHUMBERLAND AND TYNE AND WEAR
Hospice Provision
Martin House, Clifford, West Yorkshire
St Oswald's, Gosforth,

  Children from Newcastle also access hospice provision from Butterwick House (Stockton on Tees), Eden Valley (Carlisle) (a discrete children's area within an adult hospice) and Derian House (Chorley, Lancashire).

Community Services

  A range of services provided across the area include respite care, children's community nursing and paramedical services, children with disability social work teams specialist outreach for cystic fibrosis, oncology, allergy, muscular dystrophy, renal and cardiac (Newcastle) and services for children with complex needs and life limiting disorders.

  CLIC nurses provide a service to children and young people with cancer and leukaemia and Sargent Cancer care provide social work support in Newcastle. Bereavement services are provided by a community team (Northumberland and N. Tyneside), the Barnados Orchard project and Children's Macmillan service (Newcastle) and Sunderland Counselling Service, Sunderland/South Tyneside.

  Local Authority residential short break care services and outreach services provided across the area include eg Grove House, Gateshead and Seaview Road West, Sunderland which can provide residential short-breaks for some children with complex health care needs.

  Rainbow Trust, Hexham Northumberland provides residential and outreach services to Northumberland, Tyne and Wear.

COUNTY DURHAM AND TEES VALLEY
Hospice Provision
Butterwick House, Stockton on Tees.
St Oswalds, Gosforth,
Martin House, Clifford, West Yorkshire.

Community Services

  Respite provision in County Durham and Darlington provided through Harewood House, Barnado's, Park House, and the ARC (private nursing and respite). North Durham uses Park House, Heathways in Seaham, Barnado's, and Lowsteads in Hexham to provide respite. Tees uses the ARC and Piper Knowle facilities, an NHS respite care home. North Tees and Hartlepool access the ARC, Piper Knowle, and Hartburn Lodge a social services respite facility, a continuing care team providing home based respite care. Children's community nursing services, specialist services for respiratory and diabetes. Other voluntary agencies in the area are Crossroads and Rainbow Trust, Hexham.

Durham

  Paediatric Home care ream in North Durham who outreach from University Hospital of North Durham. They also provide care for children who wish to die at home-based on the child and a family need at that time.

Tees

  Community care for these children and young people, which includes ventilatory support, is delivered within the Tees and North East Yorkshire Trust but managed by Children's Community manager based within South Tees NHS Acute Hospitals Trust.

  Health care assistants are trained to work in the home and packages of care are designed in partnership with social services and education with hours allocated according to need. Assessment and ongoing support of these packages is through the Children's Community Manager.

  Partnership with the Children's Intensive care unit at James Cook university hospital is also ongoing for ventilator dependent children. These children may have/been receiving care in the South Tees area or may be cared for at the Newcastle upon Tyne regional centre but community support is available within South Tees.

  The children's acute service at James Cook University Hospital employs children's specialist nurses for Cystic Fibrosis and Asthma who operate between the acute service and the community. These nurses offer care to families should the child/young person needs become palliative.

  There is also a children's community team (in partnership between Children's acute service and TNEY—learning disabilities service)

  A local centre (Voluntary) "Zoe's Place" offer palliative care and support to babies and their families.

NORTH AND EAST YORKSHIRE AND NORTHERN LINCOLNSHIRE
Hospice Provision
Martin House, Wetherby, West Yorkshire
Butterwick House, Stockton on Tees
St. Andrews (an adult hospice with a 4 bedded children's respite unit attached), Grimsby.

Community Services

  Scarborough and North East Yorkshire have a children's bereavement councillor for siblings and staff training. Northallerton have a children's community nursing service which includes a children's Macmillan nurse. It provides an out of hours service when children are in the terminal stage of their disease. Harrogate—outreach from the children's unit with adult district nurses, agency nurses and support workers. Social services run residential respite services and voluntary agencies facilitate home respite services. Scarborough and North East Yorkshire have a children's community nursing team with 24 hour on call for terminal care. Respite care and voluntary agencies. North East Lincs have acute and specialist outreach from Sheffield Children's Hospital. Children's community nursing. Specialist outreach services include epilepsy, oncology, and surgery.

  The co-ordination of palliative care services for children is a complex issue and it is important to stress the role of cancer networks and the strategic plans that they have for palliative care including children's palliative care in each network area. These take a tiered approach to services ensuring that specialist and generalist tiers ar in place. However, for individual children the GP or other members of the primary care team often co-ordinate packages of care and some of the NOF services which have developed have enabled a more developed case management approach to be constructed, often using staff with more specialist skills to fulfil this function.

WEST YORKSHIRE STRATEGIC HEALTH AUTHORITY
Hospice Provision
Martin House, Wetherby, West Yorkshire

Community Services

  Children's community nursing and other services are provided across the area including;

    —  Airedale has social services respite provision, outreach from Leeds Health care service for oncology services, and acute outreach.

    —  Bradford has social services respite provision, children's community nursing with other therapy services eg physiotherapy and other professions allied to medicine (PAMS) and psychology support, outreach and links to regional services in Leeds.

    —  Leeds has a comprehensive children's community team and provides home respite provision, and residential respite. Specialist services for epilepsy, neonatal, muscular dystrophy and endocrine disorders. CLIC nurses provide a service to children and young people with cancer and leukaemia, and Sargent Cancer care provide social work support in Leeds.

    —  Wakefield has respite care both residential and home, and a children's community nursing team.

    —  Dewsbury has outreach and children's community nursing, with care provided between hospital and children's community nurses and health visitors.

  There are currently nine secondary in-patient children's services in West Yorkshire all offer admission for acute general paediatric medicine and surgery there is wide variation in the services offered for planned surgical procedures and for specialised paediatric care.

  Of the five health economies across the patch all have community paediatric nursing services, with two offering a comprehensive service on a twenty-four hour/seven days a week basis.

  There is one hospice in a neighbouring Strategic Health Authority that the economies of West Yorkshire have service level agreements with. Currently sixty-eight children and young people from West Yorkshire access the hospice.

  There are two charitable trusts raising monies for additional hospice provision in Bradford and Huddersfield. These are independent of statutory organisations and no agreement has been made with the NHS to fund any additional hospice provision.

  The proposal for Children and Women's Hospital in Leeds will have significant impact on future developments of services for this client group. The local economies have agreed to service evaluation and strategic development to ensure that children and women are offered services that reflect current and future anticipated need, that are patient centred and offered as close to home as possible.

SOUTH YORKSHIRE STRATEGIC HEALTH AUTHORITY
Hospice Provision
Martin House, Wetherby, West Yorkshire
Another children's hospice in planning (Bluebell Wood) Doncaster

Community Services

  Children's community nursing services and other services including;

    —  Sheffield has a palliative care team that outreaches from the Children's Hospital and supports other local services. There is also a children's community nursing team.

    —  Barnsley and Rotherham both have children's community nursing teams, one of which includes a children's Macmillan nurse, providing 24 hour terminal care.

    —  Doncaster has a children's community nursing team that works in partnership with the Macmillan team.

  Specialist services include cystic fibrosis, diabetes, gastroenterology and haemophilia. CLIC nurses provide a service to children and young people with cancer and leukaemia and Sargent Cancer care provide social work support from Sheffield Children's Hospital.

  There is also respite care provision in Rotherham (joint provision with the local authority) which will be reviewed as the local NOF project is evaluated. On an individual basis, children with specific needs are considered via high cost funding packages (e.g. ventilator dependant children at home).



 
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Prepared 26 July 2004