If you’ve been diagnosed with multiple sclerosis in the UK, you may be entitled to benefits to assist financially, whether you’re currently in work or not.
Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust, UK.
If you’re living with multiple sclerosis in the UK, there’s a good chance you’re entitled to certain benefits to help with the cost of living, and other financial commitments. You won’t just be awarded benefits after a diagnosis of multiple sclerosis – you’ll have to apply, and there are different types of benefits available.
The onus is on you to apply for benefits, and there’s always some admin to complete. The forms can be onerous and emotionally draining to complete; asking for support to complete these is often a wise move. The Citizens Advice Bureau or local social services are likely to offer help in claiming benefits; they will talk you through what benefits you may be eligible for and also support through the appeals process if needed. Also, check out your local MS Society branch to see if they have volunteers available to assist with completing benefit forms.
Having multiple sclerosis doesn’t necessarily mean you WILL receive benefits; it depends how much MS is affecting you, your quality of life, and ability to perform daily tasks.
If you haven’t claimed benefits for MS in the UK before, the best starting point is the gov.uk website, which has a specific page dedicated to the different categories of benefits. Here, you can view the range of benefits, and see what may be available to you.
We’re not going to look at all the benefits in this guide. Instead, we’ll focus on those that are for people who are living with a disability or health condition – such as multiple sclerosis.
“You can claim PIP depending on how badly your MS affects you. The form is quite long to fill out. It might be worth getting some advice from Citizen’s Advice.” @Kate13
If the question is, ‘I have MS what benefits am I entitled to?’ the answer is typically PIP. PIP is one of the most prominent benefits for MS. PIP stands for Personal Independence Payment, and it’s designed to be available to someone who has a long-term health issue, which MS obviously is.
If you're between 16 years old, and pension age, you can apply for PIP. You can still make a claim for PIP for MS if you work – whether that’s full-time or part-time – and it’s not linked to your level of income. Nor is it restricted by who you live with. Live alone, with a partner, with the rest of your family, have a carer or no carer; you can still make a PIP application.
However, having MS doesn’t automatically mean you’ll be successful with a PIP claim. When you start the process of a PIP application, you’ll need to provide a series of information – including bank details, National Insurance number and so on. Then, you’ll be sent a form, which needs to be completed and returned within a month.
On the form, you’ll be asked a series of questions to calculate your PIP ‘score’. Because PIP is awarded in two different parts – the Daily Living Component and Mobility Component – these questions focus on areas such as:
Washing and bathing
Eating and drinking
Mobility - moving around, inside and outside the home
“Put down the reality of your worst times. These are the times that financially you honestly need the help. Keep in your mind that you fully deserve the help to keep as normal a lifestyle as possible.” @Matty78
Depending on your answers, you might be awarded the Daily Living part of PIP but not the Mobility part, the other way around, or both. There are also two rates of payments - a lower and higher rate. The rate is calculated on a weekly basis, and is paid every four weeks.
The Department for Work and Pensions (DWP) will assess your claim, and there may be a follow-up assessment too, with a health professional, if more information is needed before a decision is made. The DWP will contact the applicant’s MS team directly – either by phone or sending a form to be completed – if further medical information is required.
Unfortunately, not everyone with MS who makes a PIP application is awarded it. It’s not unusual for someone living with multiple sclerosis to have their claim for PIP rejected. Don’t be disheartened; it’s not the end of the story. If you’ve been refused PIP, you can appeal and should do so.
“Call your local Citizens Advice Bureau – they will help you fill it out and support you in case you get refused as well. I did that, it took 8 months of waiting and a 3 hour assessment phone call but I was prepped and ready and got PIP immediately.” @Jofo
The first step is something called a mandatory reconsideration, and then there’s also an appeals process. If you feel the PIP decision is wrong, don’t give up. Get more advice and support – your MS nurse or specialist can help – and apply again.
Employment Support Allowance – ESA – is another benefit that could be available for someone living with MS. ESA, which is now called ‘new style’ ESA, can help if you’re unable to work because of a health condition – so multiple sclerosis comes under that – or if your MS affects how much you’re able to work.
If you’ve previously been in full-time work but have had to reduce your working hours as a result of having MS, you might be eligible for ESA. You can still work and claim ESA, but there are certain conditions. You need to work fewer than 16 hours a week, and earn no more than £167 a week to qualify for ESA.
While ESA claims are assessed, you can be paid what’s known as the assessment rate, so you can get access to funds while awaiting the outcome. Part of the ESA claim process involves a Work Capability Assessment, which could be conducted over the phone, or in person. There’s also a questionnaire to complete.
After this, and if your ESA claim has been successful, you’re put into one or two groups. If you’re unable to work now and for the foreseeable future, you’ll be in a support group. If you’re currently unable to work but could do in the future, you’ll be in the work-related activity group, which can help to prepare you for a return to employment. This involves working with a specialist coach to prepare for interviews, creating a CV, and so on.
Although we’ve covered PIP and ESA in this guide, there are other benefits that may be available if you’re living with MS. What you’re entitled to depends on your individual circumstances. You might qualify for Universal Credit. If you care for someone – if you don't have multiple sclerosis yourself but live with someone who does, and relies on you to look after them – you could claim Carer’s Allowance.
The benefits available also change depending on where you live. In Scotland, for example, there’s something called the Adult Disability Payment, which is essentially a version of PIP.