National Care Service
In July 2009, the Government published a Green Paper Shaping the future of care together, which highlights the challenges faced by the current care system and the need for radical reform.
The consultation closed in November 2009.
MS Trust response to the consultation Shaping the future of care together
3 November 2009
The Government's vision for a National Care Service in England is for a system that is fair, simple and affordable for everyone, underpinned by national rights and entitlements, but personalised to individual needs.
The MS Trust recognises the need for a debate on the future care and support system. During the engagement process only a small percentage of the population (hundreds) gave their views and with an election due in 2010 it will be interesting to see if this consultation produces a viable way forward.
It is obvious that with an ageing population the cost of the current system is unsustainable. However the Green Paper seems to concentrate on care and support for the elderly, rather than those who are living with long term disabling conditions like multiple sclerosis.
Multiple sclerosis
Multiple sclerosis is a complex and unpredictable, chronic neurological condition, affecting around 100,000 people in the UK. Often diagnosed when people are in their 20's and 30's it is the most common cause of disability in young adults. Studies have estimated that within 5 years of diagnosis 70-80% of people will be unemployed.
Challenges to the care system
- MS symptoms can vary considerably and become worse, or improve over a relatively short period of time.
- MS symptoms can affect many different areas, depending where the nerves in the brain and spinal cord are damaged. These can include problems with mobility, continence, vision, balance, tremor, fatigue, cognition, depression, pain, speech and swallowing.
- People diagnosed with MS may have long periods out of work, or have to give up work altogether. This is not always due to them being unable to do their job, it may be that symptoms like fatigue, make it impractical for themselves and their employer.
- As more women than men (recent studies suggest 3:1) have MS and it is diagnosed at a relatively young age, caring for young children can be an issue.
- Symptoms can improve during pregnancy and can return, in the form of a relapse after the birth.
- A full range of care and support may be necessary, including personal care, housing adaptations, mobility aids, respite and palliative care.
- MS is not a fatal condition - people live with it for a long time and their needs will change throughout their lifetime.
- In advanced, or rapidly deteriorating cases it may not be possible or practical for, the person to remain at home. Often the only residential care available is in old peoples' homes - this is not a suitable environment for relatively young people, or for their families visiting them.
The MS Trust will only support a National Care Service which offers:
- A joined-up, personalised, specialist service, underpinned by quality standards.
- A fair funding system, avoiding a 'postcode lottery', which recognises that people with MS may have a limited earning capacity due to their condition, and does not put undue financial pressure on individuals.
The MS Trust supports the aspiration for a national care service which ensures independence for people with MS. We recognise the challenges, but hope the government will ensure their proposals are appropriate for people with MS and not just the growing elderly population.