Summary
People living with M.E./C.F.S. have complex care needs that currently aren't being met. Governments have around 25 years before this starts to become a huge strain on social care provision. In June 2023, there were an estimated 1.25 MILLION people who met the criteria for M.E/C.F.S in the UK - most of these people are of working age.
We know that Governments simply go from election promise to election promise, whatever works on the doorstep seem to become priorities and manifesto pledges. Long term planning doesn’t seem to be a skill politicians have. The issue of palliative-style care and Social Care needs were raised within our collaborative work with National Voices who were asking for ‘demands’ to put to politicians that could become election pledges. Although all could see the need, they all agreed it’s not ‘short and snappy’ and likely to sway voters on the doorstep. How do we make this something that is raised on doorsteps?
Social care provision for those with energy-impaired diseases such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E,/C.F.S.) needs a long term strategic plan. This patient community is currently excluded and neglected in healthcare and political decisions.
The UK Government and devolved Governments have around 25 years to sort out Social Care in the UK.
A large number of those who are currently of working age but have M.E./C.F.S. are going to need care in their later years (most likely relying on family members – often parents/spouses – to be carers at the moment). This has always been an issue but it is a far greater problem now simply because of the scale of people affected. National charities estimated that 1.25 MILLION people met M.E/C.F.S diagnostic criteria in June 2023. This figure will have increased since then due to COVID19 being able to flourish within the community. It is a significant issue that needs to be addressed and can only be implemented by politicians of all sides. A quarter of those living with M.E./C.F.S. will require some form of palliative-style care. this style of care doesn’t currently exist for people with this disease. A quarter of M.E/C.F.S patients are house/bedbound and will need social care in later life (if they don’t yet).
We will be writing to both Steven Barclay MP and Wes Streeting MP, they will not have the excuse that ‘we didn’t know’.
If you don’t know, the quality of life for severe/very severe M.E/C.F.S patients is the same as (some) late stage cancers or late stage renal
failure but these patients mostly have no end in sight. They could have a very poor quality of life for years, if not decades. Yet M.E./C.F.S. patients have to fight for the right for palliative -style care or respite for their family carers. This needs to change.
What is palliative care?
Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.
Unfortunately, as we have been saying since 2018 and NICE stated in their M.E./C.F.S guideline review, most medical professionals do not understand the disease due to never being trained on this chronic illness. Palliative care teams often include specialist multi-discipline teams. This is why it is something that will require a long-term strategic plan.
25 years…. that’s enough notice. That’s more than enough time to train all relevant healthcare staff on the specific needs of this patient group and create appropriate care facilities.
GO.
We would be very happy to work with any politicians or healthcare organisations to make this social change happen…..sooner rather than later.
