However, the social care system is facing a crisis, with significant issues affecting access to essential care services. Some of the struggles the system faces include:

  • A lack of funding – the system has been chronically underfunded and additional funds have often been a sticking plaster to keep the system afloat rather than to put the system on a more sustainable footing
  • A workforce crisis – with high vacancy and turnover rates in the social care sector, poor pay and conditions, and a lack of recognition for social care staff
  • Lack of meaningful long-term reform – leaving many people facing catastrophic care costs and depending on a system that doesn’t always meet their needs.

These issues affect the availability and quality of care that people living with MND need. We therefore campaign for social care reform issues to deliver a sustainable system capable of meeting people’s needs effectively.

Our campaigning on social care in England

Update on Social Care - May 2022

We recently worked on the Health and Care Bill as it passed through Parliament. This is because it contained new proposals on paying for social care. The Bill has now completed all its stages in Parliament and has been given Royal Assent. This is when the Queen formally agrees to make the Bill into an Act of Parliament (law). Importantly, the Bill has introduced a new maximum amount, known as a cap, that anyone must pay towards their social care costs out of their savings and assets over their lifetime. This cap has been set at £86,000. People with under £20,000 in savings and assets will not have to pay towards the cap, and people with savings and assets between £20,000 and £100,000 will be able to get financial support from their local council to help with care costs.

During the passage of the Bill we worked as part of a group of other charities on the following issues:

  • We wanted the Bill to be changed so that those who receive financial support from their council towards paying for their social care could have both the amount the council pays and what they themselves pay count towards the new £86,000 Cap on costs that the Government is introducing.
  • We wanted the Bill to be changed to better support working-aged disabled adults, so that those who develop social care needs before the age of 40 would not have to pay towards the cap.
  • For those who develop social care needs between 40 and retirement age, we wanted the Bill to introduce a tapered cap so that there wouldn’t be a ‘cliff-edge’ if someone develops social care needs after 40.

However, the Government refused to make these changes and the Bill was passed without them.

Despite this outcome, there are some positives to take away and build on:

  • We’ve raised the profile of those with low/modest wealth and the needs of working-age adults,
  • We gained the backing of many Peers in the House of Lords and worked closely with them to table a series of amendments*,
  • Although MPs in the House of Commons ultimately rejected those amendments, there were demonstrations of cross-party support on the issues that were important to us, and we can build on this going forward.

All the above has built a good foundation for us to continue pushing for positive change in the social care system for people living with MND. We will continue to work as part of the Care and Support Alliance and the group of charities that worked together on the Bill on upcoming influencing opportunities.

*Here is a further breakdown of how we worked on the Bill with Peers in the House of Lords and its progress through Parliament:

During the Committee Stage of the Bill, we worked with Baroness Bull to table amendments to introduce a zero cap for care users under 40s. Although these amendments weren’t accepted by the Government, we continued to work with Peers to push for reform that meets the needs of those with low/modest wealth and working-age disabled adults as the Bill travelled back and forth between the House of Lords and House of Commons.

We subsequently worked with Baroness Wheeler to table an amendment to the Bill to ensure local authority contributions count towards the £86,000 cap on care costs. Although the amendment was passed in the Lords, it was rejected in the Commons. However, it did have the support of 150 MPs including eight Conservative MPs who voted against the Government. Conservative MP Kevin Hollinrake said:

"The Government's decision is to resist that Lords amendment, which I cannot support. In my view, this is a classic policy for levelling down, not levelling up."

Kevin Hollinrake MP

We worked with Baroness Wheeler again to table another amendment to the Bill to include zero charging for working-age disabled adults and ensure local authority contributions count towards the cap. Baroness Brinton, who was one of the 160 Peers who voted the amendment through in the Lords, said:

"It is still a disgrace that the arrangements for older people, which assume decades of working and earning, are also used for younger adults with disabilities, who we know are much more likely to be assets and savings poor and to need care and support for much longer, and who will therefore accrue much higher levels of cost than older people."

Baroness Brinton

Unfortunately, the amendment was voted down in the Commons, but it did get the support of 183 MPs including 11 Conservative MPs who voted against the Government.

Care and Support Alliance (CSA)

We are an active member of a large group of charities and organisations known as the Care and Support Alliance. As the issues and challenges around social care are common across many different health conditions and impairments it is useful to share resources and campaign together with a strong, united voice.

Most recently, the CSA has been campaigning to get more immediate funding for the social care system.

Health and Care Bill

Unlike healthcare, which is free at the point of use through the NHS, most people are expected to fully or partly pay for their social care. The Government is now planning to change the way that people pay for their social care through the Health and Care Bill. It’s aiming to do this in a few ways:

  • Introducing a limit to how much people pay for their care over their lifetime of £86,000. This is known as a ‘cap’ on care costs. There is currently no limit to the amount people pay for their care, which can leave some people facing catastrophic costs and wiping out their life’s savings or needing to sell their home.
  • Enable more people to have financial support from their local council to help cover care costs. This is known as means-tested support. Currently, only people with wealth and savings up to £23,250 can get financial help from their council. The Government is making changes that means people with up to £100,000 in savings and wealth will qualify for some support.
  • Enable more people to have their care fully funded by their local council. At the moment, only people with wealth and savings below £14,250 can have their care paid for. The Government wants to make changes so that people with wealth and savings up to £20,000 will have their care paid for.
  • Make the amount people pay for care services fairer. Currently, people who pay for their own care often have to pay a much higher rate for services than the council pays for people who have their care funded by the council. The Government wants to reduce this unfairness by enabling people who pay themselves to pay the same rate.

These proposals, along with others, are currently passing through Parliament as part of the Health and Care Bill. We are particularly concerned that many younger working-age adults affected by MND and those with low to moderate wealth are unlikely to benefit greatly from the changes. We have been working as a group of charities to influence the Bill.

Read the joint briefing on the Bill

Government White Paper

In December 2021, the Government produced a White Paper on Adult Social Care, which looks at how it intends to improve the social care system more broadly over the next 10 years.

While there are some positive elements to the White Paper such as a focus on integrating across health, social care and housing, we are not sure it goes far enough to address the longstanding issues affecting the social care system.

We will be engaging with White Paper officials on an ongoing basis to push for positive proposals to be implemented, and to encourage further reforms.

Policy briefing

We have produced a policy briefing for decision-makers outlining our positions and recommendations on social care reforms.

Read the policy briefing

Information and support

If you want to find more practical information about social care and MND then the Association has information resources that may be able to help. If you need more direct information or support, then you can contact MND Connect by calling 0808 802 6262 or by emailing [email protected]