Consultation outcome

Parkinson's UK response

Updated 22 February 2021

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About Parkinson’s

1. Parkinson’s affects about 145,000 people in the UK[footnote 1]. While the majority of people develop symptoms after the age of 65, thousands of working age people are also affected[footnote 2].

2. Parkinson’s is a progressive, fluctuating neurological condition that affects all aspects of daily living including talking, swallowing and writing. People with Parkinson’s often find it hard to move freely. There are also other symptoms such as pain, depression, dementia, hallucinations, and continence problems. The severity of symptoms can fluctuate from day to day and people can experience rapid changes in functionality over the course of the day. There is no cure.

Overview

3. We welcome the Social Security Advisory Committee’s (SSAC) consultation in this area as people with Parkinson’s value the Motability scheme. It enables them to stay independent and get out and about, therefore reducing loneliness and isolation. It also helps some people with Parkinson’s to stay in work and attend hospital appointments.

4. However, many people with Parkinson’s can’t access the Motability scheme and so where they are able, they use public transport and lifts from families and friends to get out and about.

5. As the condition progresses it becomes more difficult to use public transport to stay active. This might be because you may need to use or take extra equipment such as walkers, rollators and wheelchairs. Also, public transport isn’t as accessible as it could be for people with mobility issues. Only just over 200 train stations in the UK are fully accessible[footnote 3], and more than 40% of the railway stations across England, Scotland and Wales[footnote 4] do not have step-free access, leaving some disabled people unable to travel by train.

6. Other barriers to public transport include seats not always being offered to people with disabilities, people may find trouble getting through ticket barriers, up and down steps and onto trains with narrow doors and carriages. Also, the need to book transport assistance in advance can be a problem when using public transport, especially when your condition fluctuates so rapidly, as it can do with Parkinson’s.

7. We asked our community and our advisory staff to share their views on the consultation questions. We have not answered all of the questions the committee posed, as we didn’t have information or insights on them.

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

8. It is a voluntary choice for most people whether or not to lease a vehicle through Motability. However, in order to renew or lease a vehicle through the Motability scheme an individual must have 12 months remaining of their benefit award. Therefore, some people with Parkinson’s who have 11 months left of their Personal Independence Payment (PIP) award are unable to take on a lease due to this rule.

9. This is a particular issue with PIP as the DWP makes a significant number of 2 or 3 year awards, even for people with long term conditions such as Parkinson’s, whose mobility is only likely to worsen as their condition progresses. We would recommend the committee urges the DWP to reduce the number of short-term awards for people with Parkinson’s.

10. Under 10% of people with Parkinson’s are eligible to apply for the Motability scheme currently. We believe that low income and poverty is a factor in people not leasing a Motability vehicle. If someone with Parkinson’s is on the enhanced rate of PIP at £245 every 4 weeks and possibly on Universal Credit or Employment and Support Allowance at £73.10 per week, then their household income may not enable them to take advantage of the scheme. A Motability car might not be the priority, whereas paying utility bills and medication costs are likely to be prioritised above this expenditure.

11. Research conducted by Sheffield Hallam University[footnote 5] showed that the additional cost of Parkinson’s on a household is around £16,582 per year. This includes health and social care costs, potential loss of income from reduced hours or retirement. This additional cost of living with the condition shows that household income for those with the condition is squeezed. So while mobility is an important element to maintaining wellbeing, participating in the Motability scheme may not be viable due to the cost.

12. Also, some people with Parkinson’s cannot drive, have had their licence removed or don’t have someone who is able to drive them, so the Motability scheme isn’t that useful for them.

13. There is a risk of losing the Motability vehicle if your benefit award is reduced. The recent transfer from Disability Living Allowance (DLA) to PIP has affected many people with Parkinson’s who have lost their high rate mobility. We would argue that this additional stress and anxiety of losing access to the scheme once makes people less likely to risk using it again.

Are disability benefits used for other forms of transport or travel support; and if so, what are the benefits of this?

14. People with Parkinson’s find Blue Badges very useful in enabling them to continue to be active, as it enables them to park closer to their destination.

15. Free bus passes are valued by people with Parkinson’s, however there is not equal access to them across the whole of the UK. People over 60 in Scotland, Northern Ireland, Wales and London can access them, however in England you must be over pension age, currently 65. Also, another anomaly is that in England you can only use the pass between 9.30am – 4pm. This places severe restrictions on people with Parkinson’s attempting to find or remain in work, as they are not able to travel during peak times, which is often a key requirement of employees. We would recommend that the SSAC urges the government to:

  • make free bus passes available to everyone living in the UK at 60 years old
  • extend the time the bus pass is able to be used each day in England.

16. We know that people with Parkinson’s also use disabled rail passes, which cost £20 per year. As outlined in paragraphs 5 and 6 of this submission there are barriers to using train travel, but we know people with the condition value these passes as they enable them to make longer journeys and maintain their independence.

17. Taxis are also valued by people with Parkinson’s who don’t have their own vehicle. However, they are expensive, but more flexible than buses if you are in a rural area. Many now offer wheelchair access and some local authorities offer taxi cards and reduced taxi fares. Using the mobility component to fund taxis is expensive, but it is a fixed cost and enables people to remain active.

For disabled people who are on enhanced mobility benefits, what are the main barriers to leasing a vehicle through the Motability scheme?

18. We believe that low income and poverty are the over-riding factors here. Please refer to paragraphs 10 and 11 above for our concerns around this.

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

19. Participation in the Motability scheme gives an individual with Parkinson’s much more independence and flexibility over their lives, especially if they live in a rural area where public transport is limited. However, it is an expensive scheme so participation must be weighed up alongside other household costs.

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

20. We believe that access to work grants could potentially be available and applicable to this group of people. In a recent survey of 399 of our supporters[footnote 6] 65% of respondents had heard of the access to work scheme, however only 14% indicated that they had made use of the scheme. Therefore, we would recommend that the SSAC encourage the DWP to widely publicise the access to work scheme.

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?

21. Yes, in particular people over 65 who are receiving Attendance Allowance. They currently can’t access the Motability scheme but many might want to opt-in using their own money to pay for a car, as the scheme offers vehicle adaptations, is reliable and convenient.

22. Also, some people getting the standard rate of PIP mobility still may have significant problems with moving around and might want to access to the scheme. Perhaps Motability could scope whether having a wider range of price points with smaller cars available at a lower cost would be attractive for this client base.

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

23. The Motability website is easy to navigate and offers functionality to live chat if there are questions. They have accessible ways to get in touch by phone, minicom and textphone with queries. Also, Motability also offer sign language interpretation. It is positive that they offer these options to ensure they meet the diverse needs of the client base, as not everyone is online.

24. We believe that the Motability scheme is referred to in the award letter, if someone has been successful. But wonder if any further information is provided as people may miss this useful information in the award letter.

How easy is the process involved in leasing a vehicle from Motability for disabled people with varying needs?

25. People with Parkinson’s have shared that the process of leasing a vehicle is very easy. The staff are helpful, friendly and responsive and take time to talk you through the process.

Do those using the Motability scheme benefit more financially than those eligible for the highest/enhanced rate who do not use the Motability scheme?

26. No. Many people who use the Motability scheme may not travel many miles per year. However, the scheme is convenient and provides them with independence, but it is an expensive way to lease and insure a car.

Summary of recommendations

27. Parkinson’s UK welcomes the SSAC’s consultation on how public funds can support the mobility needs of disabled people. We recommend the committee:

a) Urges the DWP to reduce the number of short-term awards for people with Parkinson’s.

b) Urges the government to make free bus passes available to everyone living in the UK at 60 years old.

c) Urges the government to extend the time the bus pass is able to be used each day in England.

d) Encourage the DWP to widely publicise the access to work scheme.



  1. ‘Parkinson’s prevalence in the United Kingdom 2018’ Pringsheim, Tamara, et al. “The prevalence of Parkinson’s disease” Movement Disorders 29.13 (2014): 1583-1590. ↩

  2. Research on experiences of disabled rail passengers: https://www.gov.uk/government/publications/experiences-of-disabled-rail-passengers ↩

  3. Leonard Cheshire (2018), https://www.leonardcheshire.org/about-us/press-and-media/press-releases/disabled-people-cant-use-over-40-train-stations ↩

  4. Gumber, A (2017) Economic, Social and Financial Cost of Parkinson’s on Individuals, Carers and their Families in the UK ↩

  5. https://www.shu.ac.uk/research/specialisms/health-and-social-care-research/reports/economic-social-and-financial-cost-of-parkinsons-on-individuals-carers-and-their-families ↩

  6. Parkinson’s UK (2019), Employment and Parkinson’s survey ↩

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