I NOTE with interest your report on the Children's Hospice Association Scotland (CHAS) ("Hospice charity sets age limit on services for young people", The Herald, May 10).
While I agree it is impossible to feel anything but extreme sympathy for families upset by the decision of CHAS to withdraw its services for young adults over a period of three years, the Prince & Princess of Wales Hospice fully understands and supports CHAS's reasons for making this difficult decision.
The topic of suitable and individual palliative care models for young people is not new and Duchenne Muscular dystrophy sufferer, Robert Watson, the case study within the article who is under the care of CHAS, correctly cites that the facilities of Rachel House and Robin House can be quite unsatisfactory for a young adult and he understands the change being imposed by CHAS is not its fault.
The unfortunate reality for these young people who should be transitioned from children's services to adult care is that there is a huge gap in the provision of suitable places of care for them.
The truth is that there is a clear role for the Scottish Government to step up its engagement and funding to provide suitable care models and facilities. There has been some progress nationally to address this challenge, with the introduction of the national framework in 2012 – Living and Dying Well, Building on Progress. The recommendations are quite clear and state that every young person should have access to high quality, person-centered and sustainable palliative care and support, delivered in a place of their choice.
The need for accelerated support is now essential. In NHS Greater Glasgow and Clyde there are about 200 young people in the 16-19 age group, many of whom will survive further into adulthood, with complex needs who would benefit from accessing specialist palliative care services, at home, in hospital and in a hospice.
The Prince & Princess of Wales Hospice has been considering how we would respond to this challenge, recognising that our current facilities are not acceptable, or appropriate, for younger people and less than ideal for family support. To address the needs of this young cohort we will be lowering the age of referral to us to 15.
A new model of care is now being developed, with input from patients, families, NHS professionals and in partnership with CHAS. It will not be the same as the children's model of care, but will offer support during transition and periods of change, proactive and specialist holistic care close to home and, at its heart, will build a relationship of trust with patients and families which will ensure that when a deterioration or crisis occurs, there is a place of safety and support able to offer the level of care that is then needed.
The challenge for us is developing a new hospice in which to deliver this care. We recognise the need for privacy and easily-accessible facilities and are developing services appropriate for young people within our new hospice at Bellahouston Park, which will feature additional single rooms, a dedicated young adult lounge and garden, an out-patient programme and opportunities for peer support, as well as expert care.
We recently embarked on an £18m capital appeal to build this facility which will address the ever-changing needs of palliative care delivery to young people and adults. In addition, there will be an increased revenue requirement to support the additional care models. There is no national funding available to support this.
Rhona Baillie,
Chief executive, The Prince & Princess of Wales Hospice, 71 Carlton Place, Glasgow.
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