Did you know that disabled people face extra costs of around £583 a month? On average, a disabled person’s extra costs are equivalent to almost half of their income and according to research carried out by the charity Scope, money spent by disabled people does not tend to go as far. So, maximising income and using all entitlements can help make sure your finances are looked after as much as is possible.
Our welfare benefits system is an important part of giving disabled people some financial security and a degree of financial wellbeing. Claiming the right benefits with the right premiums can allow people to exercise choice and control over their support and the way they live their lives.
In this blog, we look at a variety of ways to either make sure you are receiving what you are entitled to or ways to save money by accessing specific schemes available to you.
Navigating the benefits system can be a complex and often lengthy task. Knowing how to find out what you may be entitled to can be difficult. That is where the handy online benefit calculators can help. They are only available to those living in the UK.
There are three main independent benefit calculators that can help you, to find out what you may be entitled to, and how to claim for them. They are free to use and are anonymous. They vary slightly in the information they can give you. For example, Turn2us does not give information on contribution-based benefits whereas the others do.
entitledto gives information on income-related benefits, tax credits, contribution-based benefits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work.
Turn2us gives information on income-related benefits, tax credits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours.
Policy in Practice gives the same information as entitled to, but also tells you how the benefits are calculated and how they will be affected if you start work or change your working hours.
To complete the calculators, you will need to provide information on any savings you may have, household income, existing benefits and pensions (including anyone living with you), your outgoing bills (such as rent/mortgage/childcare payments), a council tax bill.
Circumstances can mean that sometimes extra funds are required to help with things such as adaptations, mobility aids, new technology and equipment, to name but a few. There are grant funds available that may be able to help. Grants are not normally repayable and occasionally you may need to work with an intermediary organisation such as Citizens Advice or your local disability support charity.
Turn2us has a helpful search tool that can find potential grant funds. Using the filters on their search function you can search by occupational grant-giving bodies, disability charities and organisations that are local to you.
MS Research and Relief Fund offer financial assistance specifically to those affected by MS.
Disability grants is a website that provides a guide to grants for the disabled. You can narrow down your search to be more specific, such as a grant for disability equipment, including wheelchairs, adapted vehicles, trikes and bikes, computer and assistive technology grants.
Finding insurance that provides you with the right type of cover, whilst being affordable, can prove to be complex. This is especially so for those affected by a registered disability such as multiple sclerosis (MS) and applies to all types of cover. For example, with home insurance, you may have specific expensive items that you need to be covered for accidental damage, such as stairlifts, and your medical condition may lead to an increase in your travel insurance premiums.
It is important to be aware of issues that you may need to consider, whether that be when you are looking for a brand-new policy or how to deal with any changes in your medical circumstances that could affect your current cover.
MoneyHelper formerly known as the Money Advice Service is powered by HM Government and provides a detail-rich guide to obtaining insurance if you are disabled or ill. This guide looks at your legal rights, highlights things to consider when buying insurance and how to challenge decisions that you feel may be discriminatory.
Insurance and MS is an informative guide provided by the MS Society which looks specifically at issues that people affected by MS should consider, from types of policy and cover they provide to what you should tell insurance companies when disclosing your condition.
If you live in Scotland, Wales or Northern Ireland your prescriptions will be free, but if you live in England the cost is £9.35 per item. Some people qualify for free prescriptions if they are eligible for a medical exemption certificate. One part of the eligibility criteria that may well apply to some people living with MS is that if you have ‘a physical disability which means you cannot go out without the help of another person’ then you should be eligible for an exemption certificate.
Most of us have heard about the ‘pink pound’, but do you know about the ‘purple pound’? This is the spending power attributed to disabled households in the UK and amounts to £249 billion a year. Research has shown that disabled people are overspending in many areas compared to non-disabled people. We know that people may need a little extra help when making sure they have as much choice as is possible in how and where to spend their purple pound.
If you want to be able to make sure your disability-related expenditure is money well spent, then it would be good for you to know about the Research Institute for Disabled Consumers (RiDC). RiDC is a user-led research charity, run by and for people with a lived experience of disability. They give practical information for disabled and older people, whether that’s information about being at home, or out in the community and all based on independent unbiased research. They have guides on buying mobility scooters, getting mobility scooters into cars, driving with a disability, specialised hand controls in cars, stairlifts, home adaptations, accessible bathing and showering and even washing machines!
Whilst planning purchases for often expensive independent living aids and trying to make all the pennies stretch as far as you can it is also worth knowing about Living Made Easy. Living Made Easy is a large and trusted online comparison site for sourcing daily living equipment, disability aids or assistive technology. The website is designed and run by the Disabled Living Foundation (DLF) which is a national charity whose purpose is to provide independent advice about independent living for people with a disability, older people, their carers and families. You can search for products, get advice and find the cheapest national retailer.
It is important to know and remember that if you're disabled, the Government says you shouldn't be charged Value Added Tax on items that have been designed or adapted for your personal use – e.g., specialist mobility equipment to help you get around. As this includes products specifically made for disabled people, your supplier, installer or tradesman shouldn’t charge VAT. Your supplier will usually ask you to sign a declaration form stating the item is to be used by a person with a disability.
Do you like movies and the cinema? Do you get PIP? You could well be entitled to a CEA card from the UK Cinema Association. The card enables a disabled cinema user to gain a complimentary ticket for a person to accompany them when they visit a participating cinema.
The Warm Home Discount scheme requires big energy suppliers (by law) to help vulnerable customers in England, Scotland and Wales to pay for energy. Those who are eligible can get £140 off your energy bill. Although the money is not paid directly to you, it is a discount/rebate on your energy bill, between October and March. To be eligible for the scheme you must be on a low income or receive the Guarantee Credit element of Pension Credit. It is suggested that you first speak with your energy supplier to see if they are part of the scheme. The Warm Home Discount also has a helpline that may be able to help, they can be reached on 0800 731 0214.
If you need independent financial advice over money matters for some of the bigger things in life such as making the most of a lump sum of money such as a life insurance pay-out, redundancy payment, an inheritance or planning your retirement, Citizens Advice has some great information. These web pages tell you all about the different types of advisors and how to check they are qualified and registered with the relevant bodies.
There are many other schemes out there, if you have accessed one that we have not mentioned, please do email our helpline with details as your information could help others. Email email@example.com
Have you thought about joining one of MS-UK's Peer Pods? Here, Peer Support Co-ordinator Vicky shares updates on this growing service for the multiple sclerosis (MS) community.
By now, I am hoping that you have all heard about our new service and the themed Peer Pods that we have been running since March. You may even already have attended one or more of our sessions and enjoyed meeting others online. At MS-UK, we are dedicated to letting the voices of the MS community inform the work we do – so I am pleased to announce that we will be launching three new Peer Pods, based on what our Virtual Insights Panel or VIP (made up of people living with MS) told us they would like to see.
We understand that there are some symptoms and issues that can be difficult to talk about, particularly when they are around sensitive subjects, so we hope that by having these specific groups, people will feel more comfortable discussing the topics that really matter to them.
We also know that 'newly diagnosed' is not necessarily just those that have been diagnosed in the last month or year, or even the last five years. We understand that many people when first diagnosed can spend several years not engaging with health services or the 'MS community' and so this pod is for all those that may only now, for whatever reason, be finally feeling ready to talk.
Unlike our current pods, these sessions will have no particular theme, which means that anything can be a topic of conversation and a chance to share stories and learn from each other.
We know from experience what great benefits there are to be gained from speaking with others that are living with similar challenges, and how this can help people to feel less isolated and alone – regardless of whether you have a good support network of family and friends.
But don’t just take my word for it! Here is what some of the attendees of our pods have said so far:
'Thank you so much for your support. I really enjoyed the zoom get together yesterday, what a fantastic group of people! It was very interesting hearing everyone’s story and I’d really like to join you again in a couple of weeks.'
'I am so happy that I’ve met you, your positivity is infectious, thank you so much!'
'Thanks so much Vicky, I will pop in again next week. I really benefitted from the laughs & sharing experiences.'
'That was lovely! I nearly didn’t join as I was having a bad day, but so glad I did! Thank you so much for setting up the Peer Pods Vicky, it’s like a massive breath of fresh air seeing you all and chatting so freely!'
'So good to chat, ladies. It felt totally ok being able to share with each other in such a brilliant safe space'
'You have all helped me when I was at my lowest and loneliest.'
It needn’t stop there either! We are always happy to hear from you, so if you have any suggestions for a Peer Pod that you would like to see in the future – or if you like the idea of volunteering with us and facilitating a pod yourself – then please do get in touch!
Fancy joining one of our current or future Peer Pods? Simply contact us by emailing firstname.lastname@example.org
I look forward to ‘seeing’ you soon!
Hosted by the Marmalade Trust, Loneliness Awareness Week is here to recognise that we all get lonely. As humans this is a natural emotion that we feel as sociable beings. In the past year in particular, being made to isolate and stay in our homes has been a particularly lonely experience, despite a unifying one. Being separated from friends, family, colleagues and human interaction overall has been difficult for many at times. As the world reopens, it's easy to get overwhelmed so check out this blog from MS-UK Counsellor Mark Howe on tips to socialising in this new version of the world.
This year, the Marmalade Trust is campaigning to remove the stigma attached to loneliness and accept that it exists. It can be a difficult topic to talk about and sometimes tricky to recognise that you’re feeling this way. By increasing our understanding of loneliness, we can further help ourselves and others who experience loneliness. By removing negative language and stereotypes associated with it, loneliness becomes a widely accepted emotion and experience. The Marmalade Trust has this set of resources to help you learn more about loneliness. From the physical effects, how to talk about it and self-care, there’s something for everyone.
Here at MS-UK, we’ve been working with multiple sclerosis (MS) community to improve the services available to people who are experiencing loneliness. The Peer Support Service was launched at the beginning of this year, with a selection of Peer Pods available for anyone living with multiple sclerosis to join.
The Loneliness and Isolation report was released last year, and you can read the full report and findings here. Click the here to read Diana’s blog about the steps MS-UK is taking or watch her video below.
Last year MS-UK launched our report on Loneliness and Isolation during Loneliness Awareness Week in the height of the COVID-19 and lockdown number one where we were all been forced into isolation! A year on we have made delivered on some of the next steps which Diana Crowe, Head of Services here at MS-UK would like to share. Here's just some of the highlights.
We said we would look at creating a new online forum for people affected by multiple sclerosis (MS) however when we conducted our research we realised that there were already so many great forums out there. Instead, we shared videos on all of our social media channels about what online forums are, how to access them and how to stay safe when using them. We also created a webpage to share the different forums with the MS community.
At the beginning of 2021 we also launched our peer support service which is part of MS-UK Online. We are connecting people within the MS community who have common interests through our different online Peer Pods. Please email email@example.com if you would like to find out more how you can meet others.
We have continued to provide our online counselling service which is delivered by telephone and also by Zoom. We launched in September single session therapy which is a one-off session with a counsellor who helps to find a way forward with a specific MS-related issue that is impacting on life right now. Due to current high demand we are unable to take any referrals but are working hard to increase capacity and reduce waiting times. Please email firstname.lastname@example.org if you want to register your interest in the service and be informed when we are taking referrals again.
We continue to offer Mindfulness courses that are designed to help people with MS live more consciously and to help manage their MS. We have a nine-week Mindfulness Based Stress Reduction course and a four-week course which offers a less intensive option and is a good introduction. Please email email@example.com if you would like more information.
In October 2020 we ran a campaign on World Mental Health day which enabled us to share information about support available at MS-UK and other resources and services with different mental health organisations. In March this year we ran a campaign during National Complementary Therapy week to showcase the many therapies that for some really benefit individuals. Please take a look at our Choices booklet.
Promoting kindness was really important for the MS community so we ran a campaigns on World Kindness Day last year and in February this year on Random Acts of Kindness Day. We encouraged people to send one our postcards to reach out to someone in a random act of kindness which can make such a difference to wellbeing. Watch this video if you missed it to hear some of the stories you shared!
We will continue to do what we are doing and ensure that we do not lose sight of the issues of loneliness and isolation and work with our staff to help them recognise signs and how to support people more effectively. We are starting to talk with link workers within social prescribing services to make sure they are aware of the support available to people affected by MS.
This week we will be launching our three new Peer Pods to continue to grow our Peer Support service. They have all been chosen by our Virtual Insight Panel and we invite you to take a look and get involved. Please visit the webpage about our Peer Support Service for more information.
Watch Diana's video on Loneliness Awareness Week
Do you ever wonder if you’re doing the appropriate exercises to help you reach your goals? Or maybe you’re wondering if improving your strength and mobility is even possible with a progressive condition like MS?
The information sessions with Dr Gretchen Hawley, will not only answer those questions, but they’ll leave you feeling empowered and informed. You’ll understand the process your brain goes through to create new neural connections, resulting in improved strength and movement. You’ll also learn appropriate exercises and techniques to improve your balance and muscle tightness, leading to better function in your day-to-day activities.
Dr Gretchen Hawley is a physiotherapist and Multiple Sclerosis Certified Specialist. Her expertise in MS-specific exercise and wellness strategies often result in her clients feeling more control over their MS. Her tools and strategies are easy to understand and implement into your daily routine.
The sessions covered so far have reviewed neuroplasticity and brain changes with exercise, how to exercise to improve your mobility, fatigue management, and spasticity management.
If you would like to know more about our upcoming information session by Dr Hawley, please click here.
I am very proud and excited to be launching our MS awareness e-learning course which is aimed at anyone who is working with or supporting someone with multiple sclerosis (MS). If you want to increase your understanding and knowledge of this long-term health condition then please do sign up by clicking here and register.
Professionals here at MS-UK have worked together with the MS community to create this interactive course. It provides an overview of MS, what causes it, the different types of MS and how someone gets diagnosed. We also describe the different kinds of symptoms people experience and what treatments are available. We share real-life experiences and what professional support is available.
It is has been approved by The CPD Certification Service so will count towards your continuing professional development. It takes approximately 1.5 to 2 hours to complete and costs £20 (plus VAT) which is paid via PayPal. Alternatively, you can contact firstname.lastname@example.org if you would like to enrol and pay in a different format.
If you are interested in enrolling a group of more than five professionals, please email email@example.com to discuss a group discount rate.
Should you want further information or have any questions please do not hesitate to contact Diana Crowe, Head of Services at firstname.lastname@example.org or by calling 01206 226500.
As part of MS-UK's Online services, we have developed the Peer Support Service. Within this, there's several Peer Pods and each of them are hosted by someone living with multiple sclerosis. There's ones for specific interests and hobbies, and a general one where you can meet people in a similar situation who understand MS and the challenges it can bring. This blog is from one of our Peer Pod members. If you fancy taking part in one, click here.
I stumbled across the MS-UK website and the Peer Pods almost by accident and I thought why not give them a try? I am so glad I did, it has opened a whole new world to me, there are other people out there with MS who just get it.
The Peer Pods and the virtual friends I have made attending have been a great support to me as I was only diagnosed with RRMS in March 2021, after previously being diagnosed with CIS in 2014. The Peer Pods are a great space to talk not only about symptoms and treatments but mostly about other areas of interest such as TV, podcasts, craft and nature.
One of the members of the Peer Pod has also offered to buddy up with me so I can contact him anytime about the weird and wonderful symptoms and get support and advice. This has been a great comfort blanket.
The Pods include a great mix of people of all ages, with different types of MS including those that have been living with MS for several years. Everyone is made to feel welcome.
Some of Peer Pods also have WhatsApp groups which are great way to keep in touch and offer help and support to each other. After being widowed in January the group are always there to offer a word of comfort and support which I have found invaluable.
This has all resulted in volunteering to be an MS-UK VIP as I want to give something back to the charity that has helped me so much. In short giving the Peer Pods a try has given me such much and whole new group of friends that I hope will be around for a very long time.
Ella Shaul explains how multiple sclerosis counselling helped her in so many ways
I decided to start counselling with MS-UK as I had a recent relapse, and have struggled for most of my life with depression, anxiety and mood swings. I have been experiencing multiple sclerosis (MS) symptoms for about 10 years with no diagnosis until two years ago.
I wanted to talk through how I was feeling with someone who would understand, and start to feel that I was making a step forward to feeling better and facing my condition and my depression. I wanted to find an acceptance of my illness.
It was fantastic having Jaz to talk to each week, especially through the difficult times – what with the pandemic and the uncertainty of MS and the world around us.
I had a really good sense of wellbeing after my counselling sessions. I also realised I was enough just being myself, and not focusing on what I can or can't do anymore. I learnt to put my health and wellbeing before other things so I was then able to manage life better. I stopped putting as much pressure on myself to be doing everything.
I found it was easier to ask for help, and be more upfront when I was struggling, instead of just carrying on and making myself feel more unwell. I have been able to stop criticising myself, or if I do, I am able to change the way I’m thinking before it spirals.
Family and friends have noticed a difference in me lately. My son has even said how calm I am and much happier I've been.
I have started to connect with others with MS and it’s been really positive. It's been great knowing people who have the same struggles and discuss the similar tools that we all seem to have to help ourselves.
I would recommend counselling to anyone. At first I was unsure about it all, especially being in lockdown and having to home school – I thought I wouldn't be able to manage it all. I found taking the time out to speak with Jaz so beneficial. It's definitely a non-judgmental, safe place to offload and navigate ways to help yourself. Also I like that you can speak again with your counsellor again after six months to check how everything is going.
MS-UK Counsellor Kerry Trevethick shares her words of advice on how to manage the easing of lockdowns across the UK, as the end of restrictions is in sight and how to be kind to yourself during this time.
Across the UK, lockdown is easing and whilst many people can’t wait for restrictions to be eased and be able to socialise with friends and family again, many others may feel anxious or apprehensive about returning to things we haven’t done for a while and our old routines. Lockdown may have been difficult for many reasons but it provided a level of certainty and clarity on the rules and what we were to expect. However the easing of restrictions is less clear cut, and this can be stressful and anxiety provoking.
There are a range of different emotions that you may be experiencing such as:
It’s important to acknowledge that these feelings are valid and reasonable, and just like it may have taken time to adjust to going into the first lockdown, it may take time for us to adjust to life post-lockdown. It is okay if it takes time to adjust to life changing again.
Some people may find it very difficult in making decisions about how to keep safe now, who they should see or avoid, where should they go or not go - this is normal. For a long time, these decisions were made for us. We may feel that the responsibility of this decision making is too much, but you can take things at your own pace and remember there is no rush to get back to your old routines – you can be in control of how fast things move for you but be wary of avoidance as this can help maintain anxiety.
For some people, life post-lockdown will look very different. Maybe you have been bereaved, lost a job or had a relationship breakdown, and it is okay to feel this grief and there are organisations that can help you.
There are things that we can do to help ourselves manage our feelings as lockdown is eased and these are outlined below:
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life.
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.