Making sure the Care Act works for people with MS

Now that the Care Act has been agreed by the Queen (gained Royal Assent), the Government has been drafting new regulations and guidance that outline how local authorities should put the Act into practice. 

In June the Government published this draft for formal consultation.

So what could the latest draft mean for people with MS?

Fluctuating needs recognised

When being assessed for care and support services, people with fluctuating needs should now be asked about how their needs change over time. The draft also states that a local authority must look at a person over a sufficient period of time to get a complete picture of their needs.

This is an important step towards ending ‘snapshot’ assessments of a person’s care and support needs.

If a person has fluctuating needs, their care and support plan should now also indicate what contingencies are in place in the event of a sudden change or emergency.

We strongly pushed for this in talks with the Department of Health. It is crucial for people with MS, who may be left without the support they need as a result of a relapse.

Appropriate services

We believe people with MS should be offered a range of services, and should not be pressured into taking those that are not appropriate for them. We've pushed hard for the guidance to make this clear.

Age is now recognised as an important factor when choosing services. The guidance explicitly states that a working age person should be able to choose care and support tailored for their situation, and not be faced with a choice of facilities designed for older people that are unlikely to be appropriate for them.

Eligibility criteria expanded, but not enough

The latest version of the draft eligibility criteria now considers whether someone can access the services they need in the community, including recreational and education facilities, medical services and public transport.

Alongside maintaining personal hygiene, going to the toilet, and getting up and dressed, the definition of ‘basic care activities’ has been expanded to include:

•    eating and drinking
•    getting around your home
•    preparing meals
•    cleaning and maintenance of your home

These changes are important, as they widen eligibility for support and recognise that personal care involves a variety of activities.

What's missing?

But the bar is still set too high: currently only people with substantial needs get support and this will continue under the new system.

In our response to the consultation we recommended that that the criteria should be lowered to cover those with moderate needs. This would ensure more people with MS get the support they need, when they need it.

We also made the case that by lowering the threshold, the Government would meet the needs of thousands more disabled people. This would save money in the longer term by preventing costly hospital admissions, rehabilitation, and greater support needs in the future.

What happens next in Government and Parliament?

The consultation is now closed and the Government will publish a response and updated guidance and regulations in autumn. Parliament will then be asked to vote on this.

We will be working with the Care and Support Alliance to co-ordinate campaign action on our remaining concerns.

Have your say

If you have any comments you would like to share with us, please get in touch by emailing

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