Following on from CHAS' announcement of its withdrawal of services to those over the age of 21 and my previous post , here I will post about current hospice provision and the absolutely neccessity of respite care.
Even now, with new hospices being built in the UK, little consideration has been paid to the provision of an appropriate environment and adequate services for this specific younger patient group. The physical environment is often not geared to younger patients and their families; in the case of those living with neuromuscular disease, nurses are not trained in ventilation; and day services do not have programmes tailored to the young. In NHS Greater Glasgow and Clyde alone there are approximately 200 young people living with life-limiting or life-threatening illnesses in the 16-19 age group. They have complex needs and would benefit from accessing specialist palliative care services, at home, in hospital and in a hospice.
CHAS Chief Executive Maria McGill readily acknowledges that adult hospices are largely set up to cater for much older adults suffering from cancer and other terminal illnesses.
Rhona Baillie, CEO for the Prince and Princess of Wales Hospice openly acknowledges that their "current facilities are not acceptable, or appropriate, for younger people and less than ideal for family support.
The Prince and Princess of Wales Hospice in Glasgow realise the growing need for a transitional service and according to a letter from their Chief Executive published in The Herald, is developing a new model of care, with a lower age of referral, which will offer support through transition and recognise the need for services appropriate for younger people, including single rooms and a young person’s lounge, ease of accessibility and an out-patient programme geared for a young target audience. I wonder, however, if these beds alone will be sufficient to meet demand.
"the feeling of home"
With regards to the provision of respite, respite is absolutely paramount to support our carers; it is not a luxury but a necessity. Every day across the UK 6000 people become carers, adding to the 6.5 million who are already caring for their loved ones. 516,000 of these carers are in Scotland. 8% of which are caring for their disabled children, providing physical, practical and emotional support, and help with self-care and medication twenty-four hours a day, three hundred and sixty-five days a year. One in eight will combine work with caring for their loved one. Carers struggle to maintain friendships often finding themselves isolated; many have to give up work or reduce their working hours because of their caring role; 61% have suffered from depression, with 92% feeling more stressed as a result of being a carer (statistic from the report, “Prepared to Care? Exploring the impact of caring on people’s lives”). Respite also benefits the individual affected by neuromuscular disease as they are able to gain some independence from their family, while also socialising with peers with similar conditions.
Respite care is notoriously difficult to come by, not only for those living with neuromuscular disease but those with chronic disease too. Their needs are not addressed by the acute services (nor would it be appropriate to admit them to the acute hospitals) and hospice beds are in such demand that respite cannot be provided there; the result is that respite needs may only be met in nursing homes or specialist centres whose environments may be inappropriate for the care of young adults. The provision of respite is an area that urgently needs to be considered to avert a potential crisis in the making given that the United Kingdom has an ageing population, increasing numbers living with chronic disease, and those with life-limiting diseases living longer, resulting in an increased burden of care on family and friends.
With adults hospices not suitable for young adults and no respite care available within these hospices - or anywhere else for that matter! - what does the future hold for the young adults affected by CHAS' announcement? What can be done for these young adults desperately in need of care? How do we make a difference to the lives of those affected? I'm not sure but will put some thoughts together in my next post.