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SPPC Blog

Respite care and transitions: a complex problem

On Wednesday 8th October, MSPs in the Scottish Parliament will debate the 'Absence of Suitable Hospice and Respite Facilities for Young Disabled Adults'.

Inadequate access to respite care is just one dimension of the many difficulties experienced by young people with life limiting conditions as they move (transition) from children’s to adult services.

Children’s hospice services, including those provided by CHAS, offer the provision of holistic symptom management, emergency admissions, home care and short planned breaks. The purpose of a stay may also be the provision of a break for the child or young person and their parents, as well as end of life care and subsequently bereavement support for all of the family of the child or young person.

Scotland’s adult hospices are based on a very different model (in which the primary purpose of a stay will generally be to assess and deal with complex symptoms requiring a specialist intervention. Once these are resolved patients are generally discharged back into the community). Children’s and adults hospices share many similarities and are based on a common philosophy however they are not equivalent institutions.

The need for age appropriate respite care also extends to adults who experience the onset and progression of disease at a young adult age, for example the many individuals with multiple sclerosis.

The issue of transition was highlighted as an unmet need in the Scottish Government’s Living and Dying Well action plan in 2008. Living and Dying Well: Reflecting on Progress (SG March 2012) reported, regarding transition services, that “In many Boards this appeared to (be) a work in progress... A recurrent comment was the lack of equivalent adult services to transition to.” The Scottish Transitions Forum has developed principles for transition which provide a valuable framework.

The absence of suitable facilities is only one aspect of the situation; there are also barriers to accessing suitable facilities due to local authority funding policies, particularly since respite care for young people with high levels of need is relatively expensive (compared for example to typical costs for older people).

Leuchie House, is a voluntary sector provider of respite care for people with a range of long term conditions some of whom have high levels of need (for example advanced MS). Charging policies of local authorities may be a barrier to some young people accessing this service, despite the fact that the fees at Leuchie House are significantly subsidised by charitable fundraising and other grants.

A number of factors relating to Scotland’s health and social care system combine to make this a complex problem to address (beyond the significant challenges of resources). Identifying these factors may help to provide pointers to solutions:

1. The relatively small numbers of people affected in each local authority area may make dedicated local facilities difficult to finance and sustain. Any national solution is likely to require complex partnership across multiple NHS Boards and Local Authorities and there will be a need for a “lead broker”, with the resources to carry out complex and potentially protracted work.

2. As has frequently been articulated, whilst the financial costs of respite care fall on Local Authorities (and also on individual members of the public and voluntary organisations), the financial benefits tend to accrue to the NHS (in so far as respite care supports the health of the carer and prevents crisis admissions to hospital). It is to be hoped that ongoing moves to health and social care integration will address this issue of resource allocation.

3. The range and complexity of needs of young adults living with severe disability and/or life limiting disease makes a “one size fits all” solution inappropriate, and there is probably a need to develop a range of person centred options. Assessing the demand for services is therefore complex. There may be differences in preference as well as need (for example between getting respite at a dedicated centre vs. being supported to access a mainstream holiday facility, though this latter may not be feasible where support needs are high).

4. Whilst (at least until Self Directed Support becomes more widespread) responsibility for commissioning respite services lies with local authorities, some of these young adults may need quite high levels of clinical care as part of their respite.

5. There may be voluntary sector organisations who could be potential providers of new services, however the conditions for financial viability and sustainability need to be created for them to enter the market. A similar point could be made in terms of the independent sector.

These essentially practical complexities need to be overcome if the needs of growing numbers of young adults with life limiting conditions are to be met.

This blog is by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care. Mark is also on the Board of Trustees for Leuchie House.

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