Written evidence submitted by MS Society [ASC 027]

About MS

Multiple sclerosis (MS) is one of the most common neurological conditions in the UK. In England, there are over 100,000 people living with MS.[1] It’s a progressive condition and people commonly experience their first symptoms in their 20s and 30s. No two people with MS experience the condition the same way. Symptoms vary greatly between individuals, many are invisible, and they often fluctuate. The most common symptoms of MS include vision problems, numbness and limb weakness, fatigue, bladder and bowel problems, and pain. As many as 55,000 people with MS in England could need care and support for daily activities at any one time.[2]

About the MS Society

The MS Society is the UK’s largest charity for people living with MS, with over 29,000 members and more than 270 volunteer-led branches, and is the largest charitable funder of research into MS in the UK. We’re here for everyone living with MS – to provide practical help today, and the hope of a cure tomorrow. We play a leading role in research. We fight for better treatment and care. We let people with MS know they’re not alone, and offer advice and support to help them manage their symptoms.

How has Covid-19 changed the landscape for long-term funding reform of the adult social care sector?

The past decade has shown that the social care funding system isn’t fit for purpose, and the pandemic has underlined this. Local authorities have been consistently underfunded, while demand is increasing due to an ageing population and people with disabilities living longer. Consequently, local authorities have struggled to provide the effective care and support many people affected by MS need. Too many people find they aren’t eligible for locally-funded support until their needs get worse, are unable to afford care or find any care locally, or the care available isn’t reliable or appropriate for their needs.

We surveyed people with MS in 2019, which found 1 in 3 people hadn’t received the care and support they needed to assist with daily living in the past 12 months.[3] Of those, 4 in 10 relied on unpaid care from family members and friends. The care and support required ranged from help to complete essential day to day tasks – such as washing and dressing, preparing meals, and administering medications – often alongside support to leave the house, socialise and ‘mop and shop’ tasks.

These failings have only been heightened during the coronavirus pandemic. Local authorities are now facing a deficit of £7.4bn in lost income and additional costs related to the pandemic.[4] As such, Directors of Adult Social Services found only 4% of Directors in June 2020 were fully confident that their budgets would be sufficient to meet their statutory duties this year (compared to 35% in 2019/20). And, demand for social care services has been steadily rising over the past year, alongside unmet need.[5]

During the pandemic many people had their care reduced, cancelled or delayed due to a multitude of factors – including lack of personal protective equipment, sickness levels among care staff, or cancelling their own care for fear of contracting the virus. This was the experience of nearly a quarter (23%) of people with MS we surveyed between April and May last year.[6] This has meant unpaid carers, family and friends have had to step up and take on even more responsibility and caring than ever before - Carers UK found 81% of unpaid carers have been providing more care than before the first lockdown.[7]

Shielding, isolation and the reduction of preventative services has led to deconditioning within the MS community. During lockdown, over a third (34%) of people told us they felt their MS symptoms had got worse, with many saying their ability to walk had deteriorated, they were experiencing increased fatigue and pain, and were struggling with low mood.[8] Rehabilitation services are often utilised as a preventative measure to slow the physical and psychological effects of MS. But, when it came to speaking to a rehabilitation professional during this time, 7 in 10 (69%) of those who needed it said they were unable to. Of those whose symptoms had worsened, over half (51%) felt a reduction in, or changes to, specialist support had contributed to their symptoms getting worse.[9]

Cancelled and/or delayed treatment will often leave people with increased social care needs in the longer term – due to deteriorating symptoms. Attempting to clear this backlog and improve the quality of life for people affected by MS will take time. But, while we’re waiting for the NHS to stabilise and services to restart, the social care system will also be deep into its own recovery phase. Both these public services not being available as they should be will mean more people may be relying on the social care system for that care and support – or, on family and friends.

Although the pandemic hasn’t changed the fundamental need for adult social care funding reform, it’s likely led to increased unmet need among the MS community and beyond. The pervading issues and desperate need for reform have been brought to the public’s attention, arguably making the political incentive for such reform greater than ever.

How should additional funds for the adult social care sector be raised?

We advocate for additional funds for the adult social care system to be raised through taxation, on a compulsory whole (adult) population basis. In conjunction with making care free at the point of use, such a system would protect people from the risk of very high lifetime costs, make care more accessible and support people to live healthier more independent lives.

In 2018, we facilitated focus groups across England to explore how people with MS want to see social care funded, and what they think the state and the individual’s responsibility should be for paying for social care.[10] Across the focus groups, there was broad agreement that central Government should increase investment in social care and that the state should take on more responsibility for paying for care. But there was also a clear desire that social care should be funded through a risk-pool approach, in which everyone contributes into the system and everyone gets something out of it if they should need it, like the NHS. There was clear consensus that some form of increase in taxation would be the preferred way of funding the social care system in the long-term.

This is supported by new nationally representative polling by IPPR and Independent Age which found 61% of respondents felt funding on social care had been below what was needed over recent years, and 53% said funding needed to increase when the pandemic is over (compared to only 6% who said it should decrease). General taxation was the preferred method for funding.[11]

We don’t take a view on exactly what form of taxation should be used to raise funding for the social care system. However, we don’t think proposals for a voluntary insurance system, increases in council tax, or a lump-sum payment on retirement would raise adequate funding in equitable way to provide a viable solution, at least not in isolation.

Local taxation is dependent on regional wealth, meaning if this method is utilised, unwarranted variation in services and provision would expand across England. Additionally, due to the small increases which could be made, Nuffield Trust have argued that this has limited potential to protect people from catastrophic costs of care.[12]

Voluntary personal insurance-based system, in which people of all ages could choose to insure themselves against the risk of requiring social care, wouldn’t be sustainable for people with MS due to the unpredictability of the condition – and care needs - making it challenging to insure against. People who are born with a disability, or who develop a disability early in their lives, wouldn’t be able to purchase such insurance, given they have a pre-existing health condition. Awareness of social care is low amongst those who don’t need it. It’s very difficult to ensure a sufficient pool of healthy people opt-in to voluntary insurance to make risk-pooling financially viable.

Our recommendations

We’re a member of the Care and Support Alliance and are committed to their principles for reform:

1. The cost of care is pooled on a compulsory whole (adult) population basis, funded through taxation.
2. Care is free at the point of use.
3. There is an independent, standardised national eligibility threshold and assessment process for social care, to prevent rationing.
4. Eligibility is set at a ‘moderate’ level to enable those in need of community and preventative support to access it and to encourage more focus on prevention.
5. The care and support needs of working age disabled adults and older people are both addressed.
6. There is increased support for unpaid carers through more breaks and better core support, including helping carers to juggle work and care, and increased Carer’s Allowance and other carers’ benefits.
7. There is a new deal for care staff, beginning with an immediate pay rise and including an agreement to move to parity with the NHS for the same roles, by a set date; a revised career structure; better training and development opportunities; and registration.
8. Social care must have parity of esteem with the NHS and reform needs to ensure smooth working between social care services and other agencies, including the NHS and housing.

April 2021