Consultation outcome

MS Society response

Updated 22 February 2021

About MS

1. Over 100,000 of us in the UK have multiple sclerosis (MS). It’s unpredictable, and different for everyone. It’s often painful and exhausting, and can cause problems with how we walk, move, see, think and feel. It can make it hard for us to work, and do the things we enjoy. But it doesn’t have to be this way.

We’re the MS Society

2. We’re the MS Society – a community of people living with MS, scientists, campaigners, volunteers and fundraisers. We understand what life’s like with MS, and we support each other through the highs, lows and everything in between. And we’re driving research into more – and better – treatments. For everyone. Together we are strong enough to stop MS.

MS and mobility

3. MS has a substantial impact on people’s lives in a variety of ways. The strongest affects are felt in relation to people’s ability to work, mobility, social life and activities associated with daily living.

4. People with MS face extra costs of around £200 a month on average because of their condition^{[footnote 1]}. In 2013 Personal Independence Payment (PIP) designed to help people with these extra costs of living with a disability or long-term health condition, began replacing Disability Living Allowance (DLA).

5. For people with MS the biggest change is the introduction of the 20m rule to decide who gets the most support with mobility. This has meant that people who are able to reliably walk over 20m can no longer receive the highest rate.

6. At least one in four people with MS are losing out on PIP. That’s at least 12,886 people with MS who have lost out on support since PIP was introduced, compared to the level of support received under DLA.^{[footnote 2]}

7. Of those surveyed by the ICM who had seen a decrease, 59% of people had received less mobility support, compared to 31% who had a decrease in daily living. Looking at the rates of components specifically, by far and away the most common decrease was moving from higher to standard rate mobility, accounting for 47% of those who had lost support. 12% lost their mobility award completely.^{[footnote 3]}

MS and Motability

8. The Motability scheme enables anyone in receipt of the higher rate mobility allowance of PIP to use their mobility allowance to lease a new affordable car, Wheelchair Accessible Vehicle (WAV), scooter or powered wheelchair. A person with MS who chooses to access the Motability scheme can use all or some of their allowance to lease the vehicle of their choice. Payments are taken automatically.

9. Motability figures show that 6% of their customers are people with MS.^{[footnote 4]} A recent survey of people with MS by the MS Society showed that 61% of people on DLA have used the Motability scheme in the last 12 months. 52% of respondents in receipt of PIP have used the scheme in the last 12 months. 7% said they needed it, but have been unable to access it.^{[footnote 5]}

10. The changes to the mobility assessment criteria has created concern among individuals who are currently enrolled in the Motability scheme around the possibility of losing their vehicle. A recent survey of people with MS by the MS Society shows that 23% of respondents who receive less (or nothing) following a reassessment from DLA to PIP have used the scheme in the last 12 months, but now lost their entitlement. 13% of respondents who receive less (or nothing) said they needed to access the scheme in the last 12 months but have been unable to.^{[footnote 6]}

The loss of my Motability car would lock me into our house as no buses are equipped for disabled people here and it is too far to walk to catch it. We wouldn’t be able to get to hospital either, and I’m in hospital regularly. We wouldn’t be able to enjoy life or afford to live.

11. It’s not only people transferring from DLA to PIP who are worried. It’s also people already on PIP who know they could lose access when their award period ends and they will have to undergo another assessment.

12. The Motability scheme does have a support package in place for people who are no longer eligible following a reassessment. People have approximately eight weeks from when the allowance payments end to return their car. As long as the car is returned in good condition they will be offered a transition support payment or stopped allowance support payment. The amount received depends on when someone joined the scheme but ranges from £2000 - £250. People are given the option to extend their hand-back deadline to 26 weeks, but doing this will reduce the transition support payment significantly.

Although Motability gave me the £2000 payment and a proportion of my deposit back, we still had to add to it to get a half decent car. We now have the added expense of that loan too.

13. For people who decide to appeal the decision there is limited support during this time. For some they may offer a discretionary extension past the 26 weeks. We know that appeals can take longer than this in many cases, so this extension is welcome but should be available to everyone going through the mandatory reconsideration or appeals process.^{[footnote 7]}

Questions 1 and 2

Q1. For those who are eligible, is not leasing a vehicle through Motability a choice?

Is the decision not to use the scheme related to a preference for using public transport or is it due to other factors?

Are disability benefits used for other forms of transport?

Q2. For disabled people who are on enhanced mobility benefits, what are the main barriers to leasing a vehicle through the Motability scheme? This could include financial, practical, information based or personal factors for example.

What are the key issues for those who feel they cannot opt-in to the Motability scheme?

14. We have combined the answer to these two questions.

15. Some people can’t drive, are unable to drive or choose not to drive, so use the money on other forms of travel such as taxis. The mobility payment helps with this.

I relied on it to help with the cost of taxis for getting to work or attending social events. It helped towards my financial income which was not huge in the first instance. The loss of it per month was a loss and a negative impact. It made me think before undertaking travelling any distance as this was my travel fund.

16. Some people spend the money they receive through PIP differently. For some people with MS this is through necessity rather than choice. This can be because they need to use the money for essentials such as bills and food.

17. Some people choose to spend the money running their own vehicle. However, this could be partly because they are worried like many others that if they swap from their own vehicle to a Motability vehicle, they could lose it.

When I got the high rate DLA mobility I had more money to put towards the cost of running my own car, but now that has reduced as I only get standard mobility. I am just glad I never had a Motability car as that would have been an awful situation to be in.

18. It often isn’t because they prefer using public transport. Many people with MS are unable to use buses easily. They struggle to walk to the bus stop, wait at the bus stop, the buses aren’t accessible, and continuing with the journey once they reach their destination is often difficult.

Taxis are too expensive, and we can’t use public transport. Unless the bus driver is willing to give me a piggy-back to the shops and back once we get into town!

19. Some people are reluctant to potentially lose their car. The concern of reassessments is deterring individuals from claiming support from the Motability scheme. They are reluctant to become reliant on a vehicle which could be withdrawn following a reassessment.

Do I start another relationship with Motability as DWP will begin starting to think about my PIP application again? My disability won’t have disappeared. So, do I go with the Motability car with the risk that they will take it away again?

Now I can get a Motability car, with hand controls which I need, but I’m scared of losing it next year when I’m due to be reassessed.

20. Some people don’t understand the process and therefore how they might be better off in the long-term. We have spoken to people who are unable to afford an initial payment to afford the car they require and then end up struggling financially every month. People are also not always aware of other schemes or programmes that are available to them that may lessen the impact, for example Access to Work, or grants provided by Motability.

I was initially awarded 0 points for mobility and daily living. I had to go eight months with no payments causing me financial suppression. I had to pay £15 each way for a taxi to and from work.

###Case study – xxxxxx, xx

xxxxxx was diagnosed with MS in 2016. He left work as a joiner after it became too dangerous for him to continue. He applied for PIP and received 0 points for both components. Following a tribunal, xxxxxx was awarded the enhanced rate for both mobility and daily living.

xxxxxx has chosen not to access the Motability scheme. “I have looked into it but because of my mental health it’s too much to think about right now. Some of the initial costs seem quite high, like a deposit. I use a mobility scooter and I have my own car which has an electric hoist. If my legs get worse though, I’ll need to get a van with a drop-down ramp.”

“I did have savings, but they’ve gone right down and I can’t afford to top them up because we have to use the money we get from PIP to pay for other things. If I got a Motability vehicle, in the end I’d have no money at all.”

Question 3

Q3. How does participation/non-participation in the Motability scheme impact on the life of a disabled person?

21. People with MS who are able to participate in the Motability scheme have positive experiences. It makes a significant difference in their lives. Of the respondents who were Motability users 9 out of 10 (92%) agreed that the scheme had enabled them to maintain their independence and similar numbers (95%) reported it had enabled them to get out and about. Almost a third (31%) agreed that it had enabled them to continue caring for children, while 29% said it had enabled them to continue their voluntary/unpaid activity^{[footnote 8]}.

The income I receive from DLA and the access to a Motability vehicle allows me to maintain as normal a life as possible, without them I would be housebound.

I value the support I get from Motability and the hassle-free way that insurance, servicing and breakdown cover is dealt with, also the reliability of the car.

65% of people with MS we surveyed told us that moving from DLA to PIP had a negative effect on their mobility.^{[footnote 9]}

###Case study - xxxxx, xx xxxxx was diagnosed with MS in 2008. She lives with her husband in a small, rural village in North Yorkshire. In 2011 she retired because she could no longer drive because her MS had got worse.

xxxxx found out about Motability from her friend and found the information useful and easy to find. She’s been using the scheme now for over five years. “At the moment I have an estate car with a swivel passenger seat. We previously had a minivan which I could drive my wheelchair into. I thought having the swivel seat would be better but it’s not. I realise now it’s better to get a wheelchair drive into the car. We will change it when our lease on the current car runs out.”

“Having a Motability car is brilliant. My husband can take me out now and I’m not stuck at home all the time. It allows me to be more active and independent. The car has a completely positive effect on my life. It would be terrible if we had to return it. I wouldn’t be able to get out. I wouldn’t be independent.”

22. A reduction in someone’s financial support through a reassessment from DLA to PIP means people with MS cut back their expenditure in certain areas because they have to spend more on others.

23. Some people report having to increase their spending to compensate for a reduction in state support. For instance, 46% report spending more money on their own vehicle expenses. This rises to 84% among those who have specifically lost their Motability car scheme support.^{[footnote 10]}

Reduced money means that I am now confined to the house as I am about to hand my car back as they say I don’t need it. I am unable to manage public transport.

As I lost my mobility car, I am now worse off financially. It stops me visiting friends and family making me more depressed as I’m housebound after work.

24. We know that people with MS, when left without their Motability vehicle turn to other modes of transport to get around. However, in many cases they are left with no option. They become isolated, unable to afford taxis or a new car, or unable to access public transport either because of their symptoms or because it is not available.

25. It can also mean not being able to manage their MS as they are unable to get to medical appointments or to other treatments and therapies that help manage symptoms. 89% of Motability scheme users said it had enabled them to get to all their medical appointments.^{[footnote 11]}

I am scared I will lose everything. If I lost the mobility aspect I would become a prisoner in my own home. I am in my early 40s. I still want to do my own shopping but I cannot do this without the use of a car. We also have to travel over 20 miles for medical treatment and supportive therapy. I am very frightened about the future.

26. A number of Motability scheme users have reported positive outcomes related to work: one fifth of Motability scheme users who responded to an MS Society survey from 2015 agreed that it had enabled them to stay in their job and 13% said they would be unable to maintain their job if they lost access to the scheme.^{[footnote 12]} 27 % of people with MS who participated in a recent survey who are working have used Motability in the last 12 months.

27. One thing that stands out when talking to people with MS about no longer being eligible for the Motability scheme is that losing the vehicle is not the only problem. Alongside the adaptations which we will discuss in question 4, the Motability scheme includes car insurance, road tax, maintenance, and breakdown cover. Losing this extra support causes financial and emotional distress.

Financial running of a car is hugely expensive. This means other aspects of my life have had to be cut back.

I’m roughly £200 a month worse off now and need to pay for my own road tax.

The additional daily stress of owning and running my own car. The financial ability to keep a car on the road. I can’t afford repairs and maintenance. I can’t get to work, unless I pay for a taxi which is difficult in my area. I don’t want to use the car so that it stays in better condition.

I no longer have a Motability car and therefore my monthly expenditure has increased as I am now having to tax and insure a car and will eventually be paying repairs and tyres etc.

Every single day is stressful wondering if the only car I could afford (under £2000) will even start, let alone get me to work or whatever appointment I need. As soon as this car dies, and it will, I will be unable to work or provide very much care for myself. I have no means of achieving this.

I now have the additional worry of the insurance, road tax, maintenance, RAC assistance. Under Motability all this was taken care of which reduced the stress and worry around owning a car. So overall it has had a negative impact emotionally, financially and on my physical health.

###Case study – xxxx, xx

xxxx lives with her husband in a small town in Scotland. She has relapsing remitting MS and was diagnosed in 2013. Initially xxxx was refused PIP but after mandatory reconsideration was awarded enhanced rates for both mobility and daily living.

xxxx learnt about the Motability scheme when she received her decision letter and applied straight away. xxxx doesn’t drive so her husband uses it. She uses the full amount of her mobility component to pay for the car, and also paid an Advance Payment of several thousand pounds to get a bigger car. She says this has left them with little money spare.

“It’s our only vehicle. We use it for shopping and appointments. My husband uses it for work. We’d be lost without it. It’s our sole means of getting out.”

“The extras we get with the scheme save us some expenses. They are a real bonus. If we had to take on a car payment, for a car that could accommodate a walker and a wheelchair would be impossible.”

Question 4

Q4. How affordable are adaptations to a leased vehicle?

Does the need for adaptations put people requiring these at a disadvantage in terms of using the scheme?

What grants are available for this group of people and what more can be done to support these needs?

28. The Motability scheme is important because it provides not just the vehicle but also any adaptations the driver requires. For people with MS who have an adapted car on the Motability scheme, the impact of losing it is particularly significant. It means that they will not only have to purchase a new car, but also pay for the adaptations that they require. Having access to an adapted car can make all the difference between living an independent life, to being isolated from friends, family, and the ability to work.

The biggest impact for me is that we really could do with a bigger car, but I can’t afford that. It also concerns me that I will require adaptations soon and I will have to finance this myself.

I currently have a Motability car, it is adapted with a hoist, swivel seat and hand controls. If I lose it, I will not be able to get to my place of work. Being able to work is a big part of my life.

29. There is also the worry that having an adaptation will cause damage to the car which will be a problem when they have to return it at the end of their lease.

The loss of Motability has meant I can’t add an adaptation to the steering wheel because it will slightly damage it. This will be a problem when I return the leased car.

Question 5

Q5. For people who are not eligible, because they do not get the enhanced rate, is there a demand for opening up access to the Motability scheme?

30. If the PIP assessment is improved to make sense for people with MS and the 20m rule is scrapped, many of those who need access to the Motability scheme will have it. We have continually asked for these changes.

31. There are many ways that opening up of the scheme could benefit more people who don’t qualify for the mobility component or to improve support for those who are no longer eligible as they transition. Examples of these are above in answer to Q3 where we demonstrate the difference participation in the scheme can make.

32. We believe eligibility could be expanded to those in receipt of standard rate of mobility. People with MS receiving the standard rate would still benefit from being able to use some or all of their 7

33. The central finding from our report ‘The cost of the PIP 20 metre rule’ is that the knock-on costs created from people with MS losing out on PIP enhanced mobility due to the 20 metre rule that can be quantified already outweigh the savings cut from this support.

34. Receiving the right welfare support is paramount for enabling some disabled people to stay in employment. We know that this can be linked to access to the Motability scheme.

35. When some people receive the lower rates of mobility support they are no longer able to remain in work. When a person leaves work they no longer contribute to the Exchequer. Our report shows that over the period of the recent spending review, the Treasury will lose an estimated £1.7 million in lost tax and national insurance because of people with MS leaving work^{[footnote 13]}. You can increase this if you include family and/or friends who may have to also leave employment to care for the person with MS as well as those who may go on to claim Carers Allowance.

36. There are other areas, some less quantifiable than others, that also demonstrate potential cost savings should access be opened up, including; increased costs for transport of out-patients to hospital appointments, increased health and social care costs, and increased use of other schemes such as Access to Work. Widening eligibility to the scheme could potentially save the government money.

37. Any changes to the eligibility for the Motability scheme would need to be looked at in more detail with the engagement of disabled people, and other stakeholders.

From the first letter to tell me I was losing PIP to losing my Motability car was just five weeks and in December too! I was left with no choice but to purchase my existing Motability vehicle. No time to shop around. I understand that the process has been modified somewhat to give people time to adjust to losing their car, but it was too late for me. Why couldn’t I be allowed to pay the Motability monthly charge, at least until the March or even until the end of the three year deal? It would have given me time to decide what I wanted as a replacement vehicle instead of being hassled into buying what I had.

Question 6

Q6. How available and/or useful is the information on the Motability scheme?

38. People we spoke to had lots of positive things to say about Motability and were clear when talking about problems, this was not a reflection on Motability but the system itself.

Motability have been very good at supporting us. They let us go around and look at different vehicles. They seem to be doing better at test drives and things. Every time you call them, they’re good and helpful.

39. The issue is not necessarily about the information available, it is awareness of the scheme. Only 36% of all eligible individuals participate.^{[footnote 14]} More must be done to ensure that people know about the scheme, how it works, and how they can benefit so they are able to make an informed choice. We agree with the findings from the National Audit Office^{[footnote 15]}. More research must be done to consider the barriers that may be preventing uptake and how awareness of the scheme amongst those eligible can be increased.

Question 7

Q7. Not answered

Question 8

Q8. Do those using the Motability scheme benefit more financially than those eligible for the highest/enhanced rate who do not use the Motability scheme? 40. We have demonstrated above the positive impact participating in the scheme can have on people with MS. Whether someone is eligible or not, it is clear that not accessing the scheme will mean many people are worse off than those that do. If they use a car, they will have the additional costs and worries associated with running one. They will have to pay for adaptations. They may also have to pay for another mobility aid on top of their car.

41. 45% of people who responded to our survey said a mobility aid such as a wheelchair or scooter was a main additional cost. 41% of respondents said that own vehicle expenses (e.g. petrol) was a main additional cost. 35% said essential travel for daily activities was a main additional cost.^{[footnote 16]}

Getting the enhanced mobility rate has given me the greater security knowing that I can afford to run my mobility scooter and fund the cost of running the car and associated expenses.

1. Extra Costs Commission – Driving down the extra costs disabled people face: final report, June 2015 ↩

2. MS Society calculations based on government data https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/766240/pip-dla-to-pip-reassessment-outcomes-october-2018.xls. ↩

3. ICM Unlimited, ‘Measuring the socio-economic impact of changes to PIP eligibility criteria for people living with MS’ p.29 ↩

4. Motabilty data, October 2018 ↩

5. MS Society survey: My MS My Needs 3, 2019 ↩

6. Ibid. ↩

7. Motability Scheme website, accessed November 2019. ↩

8. MS Society, MS Enough: Make welfare make sense, 2015 ↩

9. MS Society survey: My MS My Needs 3, 2019 ↩

10. ICM Unlimited, ‘Measuring the socio-economic impact of changes to PIP eligibility criteria for people living with MS’ p.83 ↩

11. MS Society, MS Enough: Make welfare make sense, 2015 ↩

12. MS Society, MS Enough: Make welfare make sense, 2015 ↩

13. MS Society, ‘The cost of the PIP 20 metre rule’, 2019 p.7 ↩

14. National Audit Office, ‘The Motability Scheme’ December 2018 ↩

15. Ibid. ↩

16. MS Society, ‘PIP: A step too far’ 2018, p10 ↩