This April marked the first anniversary of the Care Act, which changed the way social care is delivered in England. Against a backdrop of chronic underfunding in social care, celebrating this milestone is not the easiest task. We recognise that some local authorities are struggling to fund the implementation of the reforms. However we also believe there is more that can be done to increase understanding amongst social care staff and professionals of long-term, fluctuating conditions such as multiple sclerosis (MS) and how they can best meet the needs of people with these conditions.
One of the biggest challenges faced by people living with a condition like MS is its unpredictable nature and the impact on day-to-day life. Symptoms can vary over the course of a week, a day, or even an hour, meaning any aspect of daily life can be affected, from the ability to make a cup of tea or keep up with friends, to career choices or planning ahead financially.
As if this wasn't challenging enough, accessing the right support when it is needed can be a whole new battle in itself. Unsurprisingly, symptoms that appear to come and go are difficult to assess and can too easily be misunderstood by health and social care professionals. This is especially true of so-called 'invisible' symptoms, including pain and fatigue common in MS.
The Care Act, which came into force in April 2016, recognised that fluctuating needs must be taken into account in deciding whether someone is eligible for care and in developing an appropriate care plan. On paper at least, this a step forward however, increasing awareness of the changes to ensure they are implemented effectively will be an ongoing challenge.
- Anyone with an appearance of need for care and support has the right to a free needs assessment from their local authority.
- People eligible for social care should be offered a personal budget which will give them the opportunity to have greater control over their care.
- Carers also have the right to request an assessment and assessors must consider how their needs might fluctuate as well, for reasons related or unrelated to the person they care for.
- Accessing the system early on can help people manage their condition and plan for the future. If a person is not found eligible for support from the council, they must be provided with information and advice about alternative forms of support.
- Assessors must look at how a person's needs fluctuate over both the short and longer term - taking account of their 'good' and 'bad days' - and the cumulative impact on their wellbeing, when deciding whether they are entitled to care and support.
- Care and support plans should have in-built flexibility to deal with sudden changes in need or circumstances so that people do not fall into crisis. If a person finds it hard to communicate or understand the process at any point, the local council must provide an independent advocate to support them, if they don't have a relative or friend to help.
What does this mean in practice?
Put simply, around one in four people with MS could need social care support to live independently at some point, and not getting that support can have a devastating effect on their mental and physical health, and that of the family members that support them. People with MS need to know that support will be there for them if they relapse, or if their carer is suddenly unavailable due to illness, for example. This is why the professionals involved in planning and delivering that support need to understand the impact of their fluctuating condition. Assessing someone's needs on the basis of how they present within the space of a half-hour assessment period is therefore not enough to make a full and accurate assessment.
Of course, what flexible, responsive support looks like will vary from person to person. Take for example, someone with MS who uses a wheelchair to help them get around. They may be affected by fatigue regularly, but for the majority of the time feel able to go and live their daily life with only a small amount of support. However, during a relapse they may be unable to sit up or walk, or could temporarily lose the use of an arm or their vision. These relapses might last for a few weeks, and may happen two or three times a year. It is during these periods that 24 hour support may be required and needs therefore to be accessed quickly by having the right support in place.
A support package that includes direct payments for instance, allows the individual to save for up to one month's worth of 24 hour care. This enables them to instantly access the extra support they need, when they need it, and provides the reassurance that they will be able to cope, while avoiding costly and distressing hospital admissions.
At the MS Society we are committed to improving the lives of people with MS and continue to campaign for more funding for social care, because we simply won't be able to realise the full benefits of the Care Act for people with fluctuating, long term conditions while funding remains at current levels. However, it is also imperative that we ensure that anyone who is responsible for assessing care needs is equipped with the right information to do so.
To support the care professionals who do this, we have produced a short guide, Implementing the Care Act for people with fluctuating conditions, together with Action for M.E., Arthritis Research UK, Crohn's and Colitis UK, M.E. Association, MS Society, NAT (National AIDS Trust), National Rheumatoid Arthritis Society and Parkinson's UK.