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Working together to influence social care reform

Yesterday, the Department for Health and Social Care released a white paper, proposing changes to social care in England. A white paper is a policy document, setting out the government’s proposals for future legislation. 

While we welcome some of the changes to improve care, they really don’t go far enough in fixing our broken system. 

Millions of people, including people with MS, have struggled to access basic care for too long. Unfortunately, we don’t think the white paper will change this situation.

Changes to the system

After waiting nearly a decade for a plan to fix social care, plans for reform were announced recently. We were told there’d be a cap of £86,000 on the lifetime costs of care and a more generous means test. This would help protect people from catastrophic care costs.

However, recent guidance shows that only the amount individuals contribute themselves, not the total cost of their care, will count towards the £86,000 cap. That doesn’t include what’s paid by your local authority or council. This means many people may end up paying the same as those with more assets.

We’re concerned this will affect people with MS, if their care journey is long and they have limited assets. This change was passed by the House of Commons last week, and will be considered by the House of Lords on the 7 December.

How this might affect people with MS

Here’s more detail about the white paper, and what it means for people with MS:

  • The recognition of personalised care in the white paper is a good step forward. However, more training is needed so that the workforce will be able to provide individualised, person-centred care.
  • Changes to direct payments will be explored, and how these will be affected by the new cap – we're worried this means people won’t be able to access or use these.
  • The system urgently needs funding to be able to give people the care they need.

How unpaid carers will be affected:

  • 5 days of unpaid leave will be introduced for people who provide care and support. This is not enough. We're calling for this to be 10 paid days a year, so unpaid carers aren’t even more financially disadvantaged.
  • We want a strategy setting out more support for unpaid carers. The last action plan finished in 2020, and we haven’t heard what the next steps are.
  • Carer’s Allowance needs to be raised so unpaid carers aren’t financially penalised. Over the past 12 years, this has only increased by £15.20 per week for carers.

And what this means for people who work in social care:

  • The care workforce must be paid fairly and competitively. Workforce shortages are a huge concern because of this. The white paper doesn’t set out a plan to deal with this, or how rising demand for care will be met in the future.
  • The white paper doesn’t cover a plan for extra training for the workforce to be able to provide personalised care. The workforce needs access to training to be able to do this.

What we’re doing

The government needs to go further to truly fix social care. The system needs urgent funding to deal with the backlog of people who don’t get the care they need. And care workers must be paid fairly.

We’re working with the Care and Support Alliance, and other organisations, to respond to all these proposed changes. We’ve been speaking to MPs and peers about how this will affect people with MS and other conditions, and calling for a plan that will go further to truly fix social care. We’ll let you know over the coming weeks how you can get involved.

We need your voice

If you have thoughts on what care should look like, or experiences accessing care, please get in touch with us on [email protected]

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