A new report from the Multiple Sclerosis (MS) Trust has highlighted the stark reality for people living with the condition.
The survey data has been released as part of an initiative during Multiple Sclerosis Awareness Week to help more people not only understand the physical aspects of the condition, but also the mental and financial impact.
As the cost of living continues to rise, affecting millions of households across the country, 70 per cent of people living with MS said their diagnosis has affected their overall financial status. Some 88 per cent have also experienced a negative impact on their career since their diagnosis with 36 per cent admitting they had to give up work or medically retire as a result.
The survey also revealed that 94 per cent of respondents have seen a direct impact on their mental health or wellbeing due to their condition - alarmingly, two in five people experience suicidal thoughts
By its nature MS is an unpredictable disease which results in a range of ‘invisible’ symptoms which can often erode all aspects of everyday life if access to specialist care is not made readily available.
Living with MS can place an additional burden on relationships, with 63 per cent of people who completed the survey admitting to being more reliant on a partner, friend or family member.
Nine in 10 people said their hobbies and pastimes had been impacted by their MS and 56 per cent of people were unable to partake in the activities they once enjoyed.
In March 2022, the MS Trust released a Nurse Mapping report which revealed that there is a national shortage of 149 MS nurses, leaving thousands of people without the vital MS care and support they need.
The MS Trust is the only charity working with the NHS to place additional MS health specialists in the areas of greatest need across the UK and continues to run its information service which provides a lifeline for people dealing with the complex health issues associated with MS when they are unable to access other specialist support.
This MS Awareness week the MS Trust is raising awareness of the direct impact the lack of accessible care is having on the everyday lives of people living with multiple sclerosis.
MS Trust CEO, David Martin said: “At the MS Trust we hear everyday about the effect the symptoms of MS can have on people and we can’t underestimate the impact that these have on all aspects of a person’s life. We hear directly from the thousands of people who contact us each year about the difference that can be made to lives by having the correct care and adjustments in place.
"Making sure the right support is available for every person living with MS is vital. Sometimes simple adjustments or an expert’s advice can make the world of difference to a person feeling unable to cope.
"We need to continue working together to tackle the unacceptable shortage of MS nurses in the UK or I fear we will continue to see statistics like those revealed in the 'Life changing: the hopes and fears of the MS community in 2022' report”
The full report can be read on the MS Trust website here.
If you have any of the symptoms of MS, make sure you are claiming all the financial support you are entitled to, including Personal Independence Payment (PIP), which could provide up to £627 every four weeks from the Department for Work and Pensions (DWP).
Below is a simplified guide to the terminology used by the DWP with an explanation of the elements involved in a claim for PIP including components, rates and how the application is scored, which in turn determines the level of award a person receives.
We also have a dedicated section on the Daily Record website which offers help in understanding the process from start to finish and includes questions on the form, what happens during an assessment and a comprehensive breakdown of the questions you will need to answer - these and more can be found here.
What is PIP?
PIP is a benefit which is gradually replacing Disability Living Allowance (DLA).
If you need extra help because of an illness, disability or mental health condition you could be eligible for PIP.
You will be assessed by a health professional to work out the level of help you can get and your rate will be reviewed to make sure you are getting the right support.
Who is eligible for PIP?
To be eligible for PIP, you must have a health condition or disability where you:
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have had difficulties with daily living or getting around (or both) for 3 months
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expect these difficulties to continue for at least 9 months
You usually need to have lived in the UK for at least two of the last three years and be in the country when you apply.
In addition to what we have outlined above if you get or need help with any of the following because of your condition, you should consider applying for PIP - or Adult Disability Payment, depending on where you live.
- preparing, cooking or eating food
- managing your medication
- washing, bathing or using the toilet
- dressing and undressing
- engaging and communicating with other people
- reading and understanding written information
- making decisions about money
- planning a journey or following a route
- moving around outside the home
There are different rules if you are terminally ill, you will find these on the GOV.UK website here.
The DWP will assess how difficult you find daily living and mobility tasks. For each task they will look at:
- whether you can do it safely
- how long it takes you
- how often your condition affects this activity
- whether you need help to do it, from a person or using extra equipment
How is PIP paid?
PIP is usually paid every four weeks unless you are terminally ill, in which case it is paid weekly.
PIP will be paid directly into your bank, building society or credit union account.
Adult Disability Payment will be paid at the same rates as PIP.
What are the PIP payment rates?
You will need an assessment to work out the level of financial help you will receive and your rate will be regularly reviewed to make sure you are getting the right support.
Payment rates increased by 3.1% on April 11.
PIP is made up of two components:
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Daily living
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Mobility
Whether you get one or both of these and how much depends on how severely your condition affects you.
You will be paid the following amounts per week depending on your circumstances:
Daily living
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Standard rate: £61.85
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Enhanced rate: £92.40
Mobility
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Standard rate: £24.45
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Enhanced rate: £64.50
How you are assessed
You will be assessed by an independent healthcare professional to help the DWP determine the level of financial support, if any, you need.
Face-to-face consultations for health-related benefits are offered alongside video calls, telephone and paper-based assessments - it's important to be aware that there is no choice here, it's up to the health professional and DWP.
Adult Disability Payment assessments will not involve face-to-face assessments, unless this is preferred by the claimant - find out more about the changes here.
You can find out more about DWP PIP assessments here.
How do you make a claim for PIP?
You can make a new claim by contacting the DWP, you will find all the information you need to apply on the GOV.UK website here.
Before you call, you will need:
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your contact details
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your date of birth
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your National Insurance number - this is on letters about tax, pensions and benefits
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your bank or building society account number and sort code
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your doctor or health worker’s name, address and telephone number
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dates and addresses for any time you’ve spent abroad, in a care home or hospital
Once you have contacted the DWP, they will send you a document to complete which consists of 14 questions. This includes space for any additional information you feel is relevant to your claim.
The questions focus on how your condition affects you, so put as much detail in as you can to help the assessor understand your physical or mental health needs.
If you have difficulty filling in your form or understanding the questions, contact your local council and ask for help or Citizens Advice Scotland.
We have a breakdown of all 14 questions here and you can take an anonymous self-test online at Benefits and Work to see how many points you would be awarded for each response.
There is also an online PIP toolkit with examples of all the questions to help you answer fully with the most relevant information, find out more about this here.
Even if you don't qualify for financial support, you could be eligible for a National Entitlement Travel Card, which offers free or reduced travel across Scotland on most public transport links.
For more information about PIP, visit GOV.UK here.
To keep up to date with the latest PIP and Adult Disability Payment news, join our Money Saving Scotland Facebook group here, follow Record Money on Twitter here, or subscribe to our twice weekly newsletter here.
