Written evidence from the Parkinson's UK CLP0022

About Parkinson’s UK

1. Every hour, two people in the UK are told they have Parkinson's - a brain condition that turns lives upside down, leaving a future full of uncertainty.

2. Parkinson's UK is here to make sure people have whatever they need to take back control – from information to inspiration.

3. We want everyone to get the best health and social care. So, we bring professionals together in the UK Parkinson’s Excellence Network,[1] to drive improvements that enable people to live life to the full.

About Parkinson’s

4. There are over 40 symptoms of Parkinson’s and these can include freezing, tremor, painful muscle cramps, difficulties speaking and swallowing, anxiety, depression, dementia and hallucinations.

5. Currently 145,000 people in the UK are living with the condition.[2] It is the fastest growing neurodegenerative condition in the world.[3] With population growth and ageing, we estimate this will increase by nearly a fifth to 172,000 by 2030. Parkinson’s not only affects those with the condition but also has a significant impact on family, friends and carers.

6. While the majority of people develop symptoms after the age of 65, thousands of working age people are also affected.[4]

7. We welcome the committee’s inquiry into the cost of living support payments as we don’t believe that the amount available nor the distribution mechanism has served those living with Parkinson’s well.

To what extent have the cost of living support payments been sufficient at helping eligible households meet the cost of essentials such as food and electricity?

8. Last autumn, we asked people with Parkinson’s and those who support them how the cost of living crisis was affecting them. Our key findings were:

●        3 in 5 (61%) said they are struggling to cover costs in general.

●        Over three quarters (77%) said they expected to turn on their heating less frequently during the winter to save on fuel costs.

●        A quarter (25%) said they were having fewer meals in order to save money.

●        Well over two thirds (70%) said they felt more socially isolated than they did at the start of 2022.

●        2 in 5 (40%) said their symptoms were being made worse by their financial situation.

●        Gas bills, electricity bills and food are the costs that people with Parkinson’s told us they were finding most difficult to manage.

●        Less than half (43%) agree that the UK government's Cost of Living Payments are enough to meet all daily living costs.

9. People with Parkinson’s have been hit harder than most by the cost of living crisis because the condition affects the nervous system, which controls body temperature. This means people with the condition can be more sensitive to heat and cold. And, if someone with Parkinson's is unable to keep warm, they can experience debilitating stiffness and pain. This means people with the condition have a need for additional support to cover their energy costs.

10. In 2017, the extra annual average household energy cost that people with Parkinson's had to pay was calculated by Sheffield Hallam University[5] to be £571. As a result of an overall increase in household energy specific consumer price index (CPI) since 2017, that cost escalated to £632 in 2021.[6] In 2022, this figure increased by a further 89% to £1,196.[7] And that is over and above the inflated energy costs the general population has incurred.

11. In autumn last year, the then Prime Minister told us that the average household should pay no more than £2,500 a year in household fuel bills. But if that average household includes someone living with Parkinson's, the bill is around £3,700.

12. The maximum amount of cost of living payment support (including the energy bills support scheme payment of £400) that could have been claimed last year was £1,500. That means that even if a person with Parkinson’s was eligible for and received all the cost of living payments, as well as the energy bill support scheme payments, the total amount received would have been nowhere near enough for people with Parkinson’s to cover their household fuel bills, let alone other costs such as food and transport.

13. The latter point is in the context of the fastest rising food prices in 45 years.[8] Our survey found that a quarter (25%) of people with Parkinson’s are having fewer meals and a quarter (25%) of respondents said they were eating less healthy food in order to save money.

14. This is very worrying given that it’s important that a person with Parkinson’s gets all the nutrients they need, as this can help reduce symptoms including constipation, muscle weakness and fatigue.[9] [10]And common symptoms such as muscle rigidity and dyskinesia (involuntary movement) can burn a lot of energy,[11] which necessitates a high calorie intake.

15. People with Parkinson's are also at risk of oxidative stress, which causes cell and tissue damage. A good diet – specifically the daily consumption of five portions of a variety of fruit and vegetable – is critical to minimising this risk.[12] Additionally, those with the condition are at increased risk of poorer bone health and are often diagnosed with osteoporosis. This is compounded by the fact that the absorption of protective nutrients like calcium is reduced in people with Parkinson’s. And loss of balance and falling also affects many people with Parkinson’s. All of this means that consuming enough vitamin D and calcium is crucial[13] for people with Parkinson's. Cheaper foods, such as canned vegetables and fried food, are associated with more rapid progression of Parkinson’s.[14]

16. Almost a quarter (22%) of people with Parkinson’s who responded to our survey said their financial situation has meant that they attend physical activity sessions less frequently. According to Sport England, almost half of the people (48%) they surveyed think the cost of living is likely to have a negative impact on their ability to be physically active in the future. Sport England also found that people from lower socioeconomic backgrounds, those living in the most deprived places and people with a disability or long-term health condition, are most likely to agree the cost of living is having a significant impact on their ability to be physically active.[15] This matters for people with Parkinson's, as being active for 2.5 hours a week can help manage Parkinson’s symptoms and has a positive impact both physically and mentally.[16]

17. Well over a third (40%) of people with Parkinson’s told us that their symptoms are being made worse by their financial situation. When people’s physical symptoms worsen, their mental health is affected too. At any given time 40%[17] of people with Parkinson’s will have depression and up to 31%[18] will experience anxiety. Just as worsening physical symptoms has a negative impact on mental health, compromised mental health has a detrimental effect on physical symptoms as well as on the effectiveness of medication. Worsening symptoms leave people with Parkinson's feeling isolated, as both mobility and motivation are affected. The negative consequences of isolation and loneliness are very well documented.[19]

What role have the following factors played in access to the cost of living support payments:

Passporting

18. Only one of the government’s cost of living payments was targeted at disabled people specifically - the £150 Disability Cost of Living Payment. That payment was only made to people who were receiving a disability benefit.

19. When we spoke to people with Parkinson’s in 2021, half (50%) of those who had experience of benefits and employment support, said the person assessing how Parkinson’s affects their daily living, didn’t have a good knowledge of the condition. Where DWP decision makers and those carrying out Personal Independence Payment (PIP) health assessments do not adequately understand Parkinson’s, they cannot and do not make accurate decisions about the capabilities of claimants with Parkinson’s.

20. Consequently, too often people with Parkinson’s are found ineligible for PIP. Indeed, over a third (38%) of PIP claims made by people with the condition since the end of June 2015 were assessed incorrectly.[20] These cases were revised following mandatory reconsideration of the decision and the amount awarded to the claimant changed. This figure is, on average, 10% higher than that for the general PIP claimant population.

21. Many people with Parkinson's who are incorrectly assessed as being ineligible for PIP will accept that decision, unless they receive advice from an expert, such as a Parkinson’s UK adviser. If those who do not challenge DWP’s initial assessment of their PIP claim are factored in, the proportion of people with Parkinson’s who do not get the benefit they are entitled to, first time, will exceed a third of applicants by a substantial margin.

22. For too many people with Parkinson's, the benefits system isn’t working. This means there are very real limitations to relying on the benefit system to identify those most in need of cost of living support, due to their disability.

23. The government has said people who didn’t get any cost of living payments could ask their council for help from the household support fund (HSF). Yet research has shown that locally administered welfare schemes, such as the HSF, are not widely known about and take up is lower for locally administered benefits.[21]

24. Additionally, different councils have different HSF rules, so there is no guarantee that people with Parkinson’s in need would be supported. Instead an uneven and unjust HSF playing field offers no security. In addition, the confusing array of routes to support and the conditions that must be met in order to get financial support, are effective barriers to successfully accessing that support.

25. All of this means that the HSF is an inadequate substitute for properly funded, centrally administered, automatically paid cost of living payments.

Recommendation

26. We believe that there is an alternative. During the height of the Covid pandemic, the Summary Care Records (SCR) database (and devolved equivalents) was used to identify those most at risk of serious illness if infected.

27. We believe the UK government should use SCR to identify those diagnosed with Parkinson’s and provide them with CPI-adjusted payments for their extra household fuel costs[22] via the same mechanism used to provide UK households with the £400 fuel rebate.

May 2023