This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.
Support for over 60s with EB
There is a wide range of support available for over 60s living with epidermolysis bullosa (EB), from EB specialist healthcare, to home adaptations and benefits you may be eligible for. If you need more care, you’re in need of financial support, or you simply want to connect with other DEBRA UK members, we’re here for you.
Contents:
EB specialist healthcare for over 60s
We work with the NHS to deliver enhanced EB healthcare at centres of excellence around the UK. Teams including DEBRA Community Support Managers, consultants, EB leads, nurses and other specialist healthcare professionals provide a multidisciplinary approach to offer you care with the highest levels of expertise.
The centres for adults include Glasgow Royal Infirmary, Guy’s and St Thomas’ Hospital and Solihull Hospital.
If you aren’t already under the care of one of these specialist centres, our Community Support Team can help by writing you a referral letter.
Having an EB diagnosis is important because it allows you to access the latest healthcare and treatment for EB from one of the UK’s specialist centres. A diagnosis is also important for applications to access other support, like Government benefits or possible adaptations to improve your home to suit your needs.
If you think you might have EB but don’t have a diagnosis yet, you can contact our Community Support Team to help you write a referral letter to your GP, so they can then refer you to your nearest EB specialist centre.
There’s also EB healthcare support for the elderly to help you get around. Travel can be difficult and expensive, so if you need help with your journeys to healthcare appointments there are a few options.
We offer grants and ways to support you with travel to EB healthcare appointments and DEBRA UK activities and events.
If you have an EB diagnosis, are under the care of one of the specialist centres, and need help with travel to your appointments, you may be eligible for support from the NHS Healthcare Travel Costs Scheme.
You may also be able to reduce general public transport costs with options like a Disabled Persons Railcard or a Disabled Persons Bus Pass.
We know that mobility can get even harder with age for people living with EB. So, as well as our support grants, we can also signpost you to other mobility aids and the process to get NHS supported mobility aid. Just get in touch with your Community Support Manager and they’ll be able to help you with this process.
Managing other health conditions
It can be even harder to manage other health conditions as well as EB. Our Community Support Team can provide information and supporting letters to non-EB healthcare professionals if you go into hospital or have other healthcare appointments, so they know how your EB should be managed.
If you’re having surgery, you may also be able to have an EB nurse accompany you to ensure you receive the right care for your EB needs.
Remember you can also use one of our “I have EB” cards, to make sure any healthcare professionals you’re meeting know about your EB and cater their care accordingly.
Continence care
If you think you may have continence issues, you can contact your GP or healthcare provider who will complete an assessment. A treatment plan might involve exercises to strengthen your pelvic floor, medications or possibly surgery.
If you’re worried about incontinence affecting your day-to-day life, you can use incontinence products, like reusable or disposable pads. If you are worried about how these may affect your skin, you can always speak to the EB team at your specialist centre.
Our Community Support Team – as well as a range of other resources and charities – is also here to offer support for your emotional wellbeing. You can find out more in the section three.
EB home care and housing options
If you think you need more care, there are different options to get you the support and living arrangement that’s right for you. By contacting your local authority for a free Care Needs Assessment and Financial Assessment, they can decide what type of care you need and how it will be paid for.
As always, our Community Support Team is here to help you with whatever care option is chosen. We can provide EB information to healthcare professionals, help with supporting letters for home adaptations, offer support grants, and provide wellbeing support if you’re having a hard time with new living arrangements.
Home adaptations are changes that can be made to your home – such as a specialised bath or a stair lift – to make it safer for you and easier to get around.
When your local council completes a Care Needs Assessment, they will send a social care professional to come see you to find out how you’re managing everyday tasks and assess your needs. They’ll then advise on what support you need, including equipment and home adaptations that would make things easier for you. If you’re considered eligible, your council will have a duty to help you.
You may also be eligible for a Disabled Facilities Grants, which is a grant designed to make larger changes to your home if you’re disabled.
For more information on these grants, home adaptations, and how to get them if you’re eligible, you can visit our full page on home adaptations.
If you need more assistance around your home than adaptations, you could opt for home care. Whether you need help with housework or personal care, home care services can help you look after yourself so you can stay independent for longer.
Age UK have guidance on what support you can receive through home care and how it can be arranged.
Choosing a care home can feel overwhelming, but Age UK have information and guidance on everything involved to help make the process as easy as possible.
Once you’ve found the place that’s right for you, we can help you with accessing EB care in your care home by providing EB information to staff to make sure they know what adaptations and considerations you’ll need.
If housing adaptations or a care home aren’t for you, specialist housing options may be something you want to consider. Age UK have information on all the options that could be best for you, such as sheltered accommodation, assisted living, and residential care.
Emotional wellbeing
Apart from contacting your GP if you or a loved one are worried about emotional wellbeing or memory loss, you can always get in touch with your DEBRA UK Community Support Manager. Our team can offer first-line emotional support or signpost you to further psychological support if you need it. We’re only a call away Monday-Friday from 9am-5pm – please call us on 01344 771961 (select option 1). You can also get in touch with us by email at communitysupport@debra.org.uk.
We have partnered with the award-winning mental health platform Togetherall, which is free for all DEBRA UK members and their families to use. Togetherall allows you to anonymously share experiences and find resources to support mental health and wellbeing.
If you need immediate attention with your mental health at any time of day, there is 24/7 support available:
- Text SHOUT to 85258 to access SHOUT’s confidential support service. They are free to contact from all major UK mobile networks.
- Call Samaritans for free on 116 123 if you need someone to talk to at any time of day or night.
Other organisations that may be helpful include Mind (the mental health charity) and Anxiety UK (a charity for those affected by anxiety, stress, and anxiety-based depression).
We have a range of holiday homes at beautiful five-star parks across England and Wales, available to all our members at highly discounted prices. Whether you’re looking for a getaway with your partner, a break with friends, or a family holiday, our homes are there to give you more affordable opportunities to enjoy some respite.
We understand how difficult it is to lose a loved one, so your Community Support Manager can be on hand to offer a listening ear when you’re facing a bereavement and when grieving.
They can also refer you to other groups for further support in your local area, help make funeral arrangements, work with you to access benefits entitlements (and possibly grants), and assist in creating a remembrance page on our website.
Please see the full bereavement support section of our website to find all the resources you may need, to offer you some practical and emotional guidance for before and after bereavement. We’ve also published a bereavement leaflet, which you can read online or request a free printed copy by getting in touch with us at communitysupport@debra.org.uk.
Peer support and connecting with members
There are loads of ways to connect with other DEBRA UK members and engage with the fantastic EB community, from online events to in-person events like our annual Members’ Weekend.
Our regular online events include Parent Pitstops, where you can meet other members and share tips and experiences with each other. We also host online events like quizzes, so whether you want to enjoy an activity or just chat with others, we have different options for you.
You can also join EB Connect, a free, private, online social platform where members of the EB community from the UK and all around the world can connect.
This is a space for you. It’s a platform where you can share experiences, make friends, have a chat, or use the interactive map to find others living with EB.
EB Connect is open to anyone affected by EB, with groups for all types of EB, and different age groups. There’s also a page dedicated to DEBRA UK, which is the best group for you to get in touch with the EB community in the UK.
EB benefits support
As someone over 60, you can receive various healthcare benefits (like free prescriptions). There’s also a variety of financial aid for epidermolysis bullosa patients over 60, including Government benefits, that you may be eligible for.
The Age UK Benefits Calculator is a useful tool for seeing if you could be entitled to claim extra money. Simply provide information like where you live, whether you’re single or have a partner, or if you care for someone. It will then give you an idea of which benefits you could claim and how much you could get. Their calculator covers England, Northern Ireland, Scotland and Wales.
We also offer a variety of support grants aimed at enriching the lives of the EB community. We will respond to all applications for a wide range of items but, as we are currently reviewing our grants policy, some grants may be temporarily on hold or limited. Please talk to your Community Support Manager or email us at communitysupport@debra.org.uk to check.
To apply for a DEBRA UK support grant you must be a DEBRA UK member. Membership is free and gives you access to a host of benefits, and can be completed at the same time as your grant application. People all ages living with all type of EB (including their close family members or carers) are welcome to apply.
When you’re over 60, you can get free prescriptions, and are entitled to other free healthcare such as NHS dental treatment, the cost of glasses or contact lenses, and NHS wigs. Age UK have more information on what you can get once you’re in your 60s.
A Blue Badge can give you more accessible parking options, by helping you access disabled parking spaces and park closer to your destination.
You can apply for or renew your Blue Badge (they usually last up to three years) online on the Government website. Some councils will also let you apply with a paper form, so you can contact your local council to check.
Before you apply, make sure you have:
- A recent digital passport photo.
- Proof of identity.
- Proof of address.
- Proof of any benefits you’re receiving.
- Your National Insurance number or child reference number if you’re applying for a child.
- The number, expiry date and local council on your current blue badge if you’re reapplying.
Attendance Allowance is for people over State Pension age, and helps you with extra costs if you have a physical or mental disability severe enough for you to need someone to help care for you.
You can find more information about Attendance Allowance and how to apply by visiting the Government website.
Pension Credit is a benefit for people over State Pension age which tops up your income if you’re on a low salary. It comes in two parts:
Guarantee Credit – this tops up your weekly income. You may get extra if you have other responsibilities and costs.
Savings Credit – this gives you a bit of extra money to reward you for saving towards retirement, if you 1) reached State Pension age before 6 April 2016 and 2) saved some money for retirement, such as a personal or workplace pension.
The Government Pension Credit calculator will show you if you’re eligible for Pension Credit and how much you could receive.
You can apply online or call the Pension Credit claim line on 0800 991234 and they can fill in the application for you over the phone.
For more information on all of these benefits and others you may be entitled to, you can visit our webpage dedicated to benefits for the EB community.
Pensions
There are a few different pensions to keep in mind for your retirement. Money Helper’s pension calculator is a useful tool to help you calculate how much money you’ll need in retirement and how much you should try and save.
The State Pension is a regular payment made to you by the Government once you reach State Pension age. It’s based on your previous National Insurance contributions.
You won’t get your state pension automatically, so make sure you claim it by visiting the Government website.
A personal pension is a pension that you arrange yourself, sometimes known as “defined contribution” or “money purchase” pensions. You can find an overview of personal pensions, including the different types and how you can make payments into yours if you’re interested in setting one up, on the Government website.
Workplace pensions are schemes run by employers to save for your retirement, with contributions coming your employer and directly from your wages.
In April 2015, the Government introduced rules which allow everyone aged 55 and over full access to their pension pot, as well as more choice over what to do with the money.
When accessing your pot, it’s worth thinking about how you’ll fund the future of your retirement, and avoid rushing any decisions that may leave you worse off in the long-term.
Age UK has more information on workplace pensions, such as how to manage your pension and what to do if you want to change your workplace pension scheme.
Legal issues and free Will writing services
We provide free Will writing services for people living with EB and offer three options for you to do this in whatever way is best for you: either online, by visiting a local solicitor, or having a Will writer visit your home.
The MoneyHelper website may also be useful, with more guidance on Wills and why you should make one.
Of course, there is no obligation to leave a gift to DEBRA in your Will, but please remember us. Every legacy donation left to us, no matter how small, goes towards providing enhanced EB care and support for the EB community today, and effective drug treatments for all types of EB for tomorrow.
An advance decision (sometimes known as a living Will) allows you to express your wishes to refuse specific types of medical treatment in the future. This will let your friends and family know your wishes about what treatment you would or wouldn’t like to receive in the future in case you become unable to make or communicate these decisions yourself. An advance decision is legally binding.
The NHS website offers more information on advance decisions.
A power of attorney is a legal document that allows someone to make decisions for you, or act on your behalf, if you’re no longer able to or if you no longer want to make your own decisions.
You can find a full Power of Attorney information guide on the Age UK website.
Ways to get involved with DEBRA UK
Our members are at the heart of everything we do. So, if you’d like to use your experience to shape the future of our EB services, decide what research we’ll fund next or to improve our events, there’s plenty to get involved with. Everyone who gets involved makes an enormous difference to us and to the whole EB community.
You can read more here to find out about all our current opportunities. If you’re a member, you can also sign up to our involvement network to receive emails about new opportunities as they come up.
If you find that you have more time on your hands now, you can volunteer for DEBRA UK too. You could volunteer in fundraising, or pop along to your nearest DEBRA shop to help out. However much time you can give, and whether you have specific skills or you’d like to learn something new, there’s a role for you.
Other support for over 60s
Remember you can always get in touch with your Community Support Manager for any support you need or to discuss any questions you have. There are also other charities that may be able to offer specific support for over 60s, such as…
Page published: October 2024
Last review date: February 2025
Next review date: February 2026