Over the next few posts I am going to write about something which is personally and professionally close to my heart that not only effects many families living in Scotland with children and young adults with life-limiting and life-threatening illnesses, but also has the potential to affect Eilidh, her well-being and my family.
I should point out that all views noted here are entirely my own.
Today I intend to give you the facts:
Today I intend to give you the facts:
Earlier this year the Children’s Hospice Association Scotland (CHAS) announced their decision to withdraw its services to those over the age of twenty-one, affecting those who are surviving and living longer with diseases of childhood and life-limiting illnesses. CHAS chief executive Ms Maria McGill wrote to the families of more than 100 young people in May inform them the charity can no longer cater for young people aged 21 or above, and services will be gradually withdrawn from this group over the next three years. As a mother to a child with a life-limiting neuromuscular disease, as a member of the Scottish Council for the Muscular Dystrophy Campaign and as a specialty doctor in palliative medicine, I would like to share my concerns over the lack of transitional planning to date for young adults living with neuromuscular disease, the shortage of suitable care facilities for this transition, and the shortfall in provision of respite services for their families.
Neuromuscular disease affects approximately 5,984 children, young adults and adults across the Scottish population; 4835 of those affected are over the age of 16. The decision of CHAS has caused much anger and concern amongst those living with neuromuscular disease currently receiving support from their two hospices in Scotland and who feel have not been consulted in the decision making process, but has also brought to the fore the problems which exist in the provision of transition services in the sixteen to twenty five year old age group. The shortfall in
adult respite care provision was also highlighted by the Cross Party Group,
chaired by Jackie Baillie MSP, at Parliament, and she invited the
representatives from CHAS to outline their plans for the transition of these
young adults over the next three years. Scotland
Neuromuscular disease is an over-arching term for a cohort of life-limiting and life-threatening conditions and as such is suitable for palliative care input. The role of palliative care in neuromuscular disorders is invaluable with an approach that is aimed at improving the quality of life of patients and their families facing the problems associated with life-limiting and life-threatening illness, integrating not only the physical care of the individual but also the psychological and spiritual aspects too. There should also be provision made to offer on-going support not only for the patient but also for their families. In the case of children, the World Health Organisation’s definition makes it clear that the total active care of the child and their family begins at diagnosis, regardless of whether they are receiving treatment or not, and continues through death and bereavement. While the ACT goes as far as including the provision of short breaks or respite care which is of importance to the issue raised in this letter. To re-iterate this, the Living and Dying Well – Short Life Working Group 6 “Recommendations for service configuration for adolescents and young adults with palliative care and end of life care needs” recommend the provision of a palliative care service that is accessible to all allowing them to receive sustainable, holistic and family centred care and support. As part of this services must “facilitate access to planned short breaks at facilities where there is very good holistic nursing and medical care, so as to provide respite for adolescents and young adults with illnesses with long disease trajectories, and their families”. Young adults should also have access, whether it be clinics or as a day patient, to adult hospices when specialist input is necessary.
Currently CHAS provide care for those living with neuromuscular conditions. In a study published in 2011 (Fraser LK, et al. Eur J Paediatr Neurology 2011; 15 (4): 326-330) 17% (mean, with a range of 5-35%) of all
hospice admissions (73% of which were for “planned stays”) were for individuals
living with neuromuscular disease: this is in no way an insignificant
number. The age of discharge from the service ranged from 18-35 which is
in line with CHAS proposing that they can no longer cater for those over the
age of 21. With regards to the transition of these young adults, the lack
of provision of transition services is not new and has been highlighted in
recent years. The Cross Party Group in the Scottish Parliament on
Palliative Care that met in March 2012 stated that “children and young
people (are) living longer with “diseases of childhood” and (are) living with
increasingly complex needs”. With regards to transition, it was
stated that CHAS was “working with other organisations, including hospices, to
look at improving care for those between 18 and 25”. In their letter
advising families of the withdrawal of services CHAS has pledged to work with
families to ensure that alternatives are in place; however, Chief Executive Ms
Maria McGill readily acknowledges that adult hospices are largely set up to
cater for much older adults suffering from cancer and other terminal illnesses. UK
With the facts given here, I will go on to discuss current hospice provisionand respite care in my next post before concluding with a post on how I see the future for these young adults as the struggle to emerge from children's services into the fog of transition.