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EB support for emotional wellbeing
With the extra demands on your mental health from living with or caring for someone with epidermolysis bullosa (EB), it’s normal to experience a range of different emotions. However, if you are struggling with your emotional wellbeing, please remember that you are not alone. The DEBRA EB Community Support Team is here to help you manage your mental health with epidermolysis bullosa and can signpost you to further psychological support available.
Below we’ve shared some tips and information including where to go to access EB mental health resources and EB counselling services.
Contents
- Mental health tips – Some practical tips that could help you in managing your mental health.
- Getting help in a crisis – Where to go to get help in a mental health emergency.
- Accessing NHS mental health support – Where to go to request mental health support through the NHS.
- DEBRA EB Community Support – Find out more about the mental health support services available through DEBRA.
- Accessing counselling and support groups – Find out more about counselling and therapies that could support your mental health.
- Support for children and young adults – Information about specialist mental health support available for children and young adults.
- Accessing hospice and palliative care – Where to go to find out about hospice and palliative care services near you.
- Other support and resources – Links to other organisations and resources that could help support your mental health.
Mental health tips
Stay connected
When there is a lot on your mind it’s easy to forget to connect with others, especially with all the other commitments you may have in your life. However, try to set aside some time and reach out to those who are important to you. Even just a 10-minute conversation with someone you care about can boost your mood.
To help you connect with other members of the EB community, you could use EB Connect, the online platform exclusively for the global EB community which enables you to connect, share experiences and make friends with other people living with, or directly affected by EB.
Set goals
If you have something in mind that you would like to work towards, why not set small manageable goals. Having something to focus on can positively impact your emotional wellbeing but be mindful not to stretch yourself too much and ensure your goals are achievable for you.
Shift your focus
If you’re feeling low or worried, remember that these feelings are understandable. When you’re feeling this way, it can be helpful to acknowledge those feelings and accept them, rather than dismissing them. It can also help to turn your mind to something you feel grateful for. Shifting your attention away from everyday worries to something that makes you happy, can have a positive effect on your emotional wellbeing.
Seek support
You may have tried different ways of improving your mental health and none of it has worked, and that’s ok. You may just need some additional support to help you. Below we’ve outlined some sources of support that you could explore.
Crisis support through the NHS
If you or someone you’re with is in immediate danger, call 999, go straight to A&E Accident & Emergency (A&E) – Mind, or if you can, call your local crisis team, if you don’t already have their number, you can find an urgent mental health helpline on the NHS website.
NHS urgent mental health helplines are for people of all ages in England.
You can call for:
24-hour advice and support for you, your child, your parent, or someone you care for.
- help speaking to a mental health professional.
- an assessment to find the right care for you.
If you are not able to speak to your local NHS urgent mental health helpline, or you need help urgently for your mental health, but it’s not an emergency, or you’re not sure what to do, you can ring 111. They will tell you the right place to get help if you need to see someone.
If you live in Scotland, NHS 24 mental health services are available to everyone and all ages. Please ring 111 or visit Mental health services at NHS 24.
If you live in Wales, C.A.L.L is the mental health helpline that is available 24 hours a day, every day. Please ring 0800 132 737, text 81066, or visit C.A.L.L. Mental Health Helpline – Community Advice and Listening Line.
If you live in Northern Ireland, Lifeline is a crisis response helpline available 24 hours a day, every day. Please ring 0808 808 8000, or visit Lifeline freephone helpline.
Crisis support for children and young adults
Papyrus
Papyrus is a charity dedicated to the prevention of suicide and the promotion of positive mental health and emotional wellbeing in young people.
If you are having thoughts of suicide or are concerned for a young person who might be, you can contact HOPELINE247 for confidential support and practical advice by calling 0800 068 4141, texting 07860 039967, or emailing pat@papyrus-uk.org
For information about Papyrus, please visit the Papyrus website.
Other mental health support in a crisis
Stay Alive is a suicide prevention resource for the UK, packed full of useful information and tools to help people stay safe in crisis.
For more information, please visit the Stay Alive website.
If you are having a difficult time or are worried about someone else you can call the Samaritans any time and from any phone for free, just dial 116 123. Alternatively you can email them, or speak to a Samaritan face to face in a branch, for more information please visit the Samaritans website.
Shout85258 is a free, confidential, anonymous text support service. If you, or someone you know is struggling to cope and needs to talk to someone, text 85258 from wherever you are in the UK, their trained Shout Volunteers are available day, or night.
For more information, please visit Shout 85258.
Suicide Prevention UK is a charity that offers help to anyone who may be struggling with their mental health and/or thoughts of suicide. Their trained volunteers use their skills and empathetic approach to offer a non-judgmental listening ear to help people in times of need. They can also signpost individuals to the most relevant support available to them at that time, so that they get the help they need.
If you need support yourself, or are worried about someone else, please ring the National Suicide Prevention Helpline on 0800 689 5652 or visit the Suicide Prevention UK website.
CALM is the Campaign Against Living Miserably a platform focused on preventing suicide. They offer a helpline and live chat from 5pm to midnight every, 365 days a year.
Visit the CALM website for more information.
Accessing NHS mental health support
To find out about the different ways to get help with your mental health through the NHS, the process, and your rights, please visit the NHS’s information on how to access mental health services.
In Scotland, you can access NHS 24 for mental distress when your GP is closed by simply dialling 111. The website also contains links to organisations in your area that provide free counselling, group and gender support services Health and Wellbeing services.
The NHS also has a self-help forum called Every Mind Matters that provides practical tips on how to manage mental distress with urgent support inclusive. This page also includes alternative links for NHS Scotland, Wales, and Northern Ireland.
Clinical psychological support could also be available by way of referral from the NHS EB healthcare centres.
Please see below for further details.
The specialist EB healthcare team can refer children and young adults under their care for psychological services either at the hospital or local to patient’s home.
For further information please ring 0121 333 8224 or email eb.team@nhs.net
The specialist EB healthcare team can refer children and young persons under their care to the hospital’s psychology service which consists of Clinical Psychologists, Trainee and Assistant Psychologists who work with children, young people, and families directly affected by EB.
Once a referral is made, one of the team will arrange a meeting to discuss the ways in which they may be able to support you.
For further information please ring 020 7829 7808 or email eb.nurses@gosh.nhs.uk
The specialist EB healthcare team can make internal referrals for psychological services for EB patients that are registered with the hospital.
For more information, please ring 0207 1880843 or email gst-tr.dermatologyreferralsEB@nhs.net
The specialist EB healthcare team can make a direct referral for EB patients under their care to the consultant clinical psychologist for assessment. For more information, please ring 0121, 424 5147 or email ebteam@uhb.nhs.uk
The Scotland EB healthcare teams based out of Royal Hospital for Children (children and young adults) and Queen Elizabeth Hospital (adults), both based in Glasgow, can refer EB patients under their care to psychological services.
For more information, please ring 0141 201 6447 or email susan.herron@ggc.scot.nhs.uk
The DEBRA EB Community Support Team is there to support you, whether you have EB, are a family member of someone with EB, or care for someone with EB. They are there as a listening ear and can offer practical support when you need it most by phone, by email, virtually or in person, whatever works best for you. They also run regular Parent Pitstops which are virtual online events that serve as a support group for parents, grandparents, and carers to connect with other DEBRA members and share experiences and ideas about topics relevant to children and families living with all types of EB.
For more information about Parent Pitstops or for other emotional support please contact the DEBRA EB Community Support Team today.
Accessing counselling and support groups
Counselling is a talking therapy that involves a trained therapist listening to you and helping you find ways to deal with any emotional issues you are currently facing.
To find out more about counselling opportunities that could be available for you, a family member, or someone you care for, please visit the NHS website.
Talking therapies are psychological treatments for mental and emotional problems like stress, anxiety, and depression.
To find out more about the different types of talking therapies that could be available for you, a family member, or someone you care for, please visit the NHS website.
If you live in England and are aged 18 or over, you can access NHS talking therapies services for anxiety and depression.
A GP can refer you, or you can refer yourself directly without a referral.
Please visit the NHS’s information on finding a talking therapies service for more guidance.
As well as the NHS there are other organisations that may be able to support you with counselling, therapy, and other mental health resources. Please see below for more information.
Changing Faces is a charity that provides free 121 counselling support for young people and adults with visible differences.
They also provide guidance, techniques, and resources to improve mental wellbeing.
To find out more please visit the Changing Faces website.
Face IT provides support and advice for anyone who has worries or is unhappy because they have a visible difference.
Face IT has been designed by experts in the field of appearance psychology, and people with a range of conditions that affect appearance can help other people with visible difference to learn new skills and boost their self-confidence through on-line sessions offering different exercises and activities.
For more information, please visit the Face IT @ Home website.
Anxiety UK is a charity that supports people with anxiety, stress, anxiety-based depression, or a phobia that is affecting daily life.
The Anxiety UK website has tips and advice and information to access their specialist services.
BACP is the British Association for Counselling and Psychotherapy and through them you can find information about different types of therapies you can also search for a BACP approved therapist through their directory.
Please visit the BACP website for more information.
Rareminds is a mental health service specifically for people living with or directly affected by a rare condition such as EB. They provide affordable, timely access to highly specialised counselling for the rare disease community.
For more information, please visit the Rareminds website.
Anyone under the age of 18 can be referred to CAHMS (Child and Adolescence Mental Health Services), which is the name for the NHS services that assess and treat young people with emotional, behavioural, or mental health difficulties. You might also see CYPMHS used which stands for Children and Young People’s Mental Health Services.
Please visit Guide to CAHMS for more information.
Childline is a free, private, confidential service to help anyone under the age of 19 in the UK with any issue they’re going through including their mental health.
Childline is available any time, day, or night by calling 0800 1111. For more information, please visit About Childline
The Kooth app is a free, safe, and anonymous place for young people to find support and counselling.
Visit Kooth for more information.
Accessing hospices and palliative care
Hospices can offer palliative care, which can be used at any stage of an illness or incurable condition, to help with symptoms as well as offering emotional or practical support both for the patient, their family, or carer(s).
You can contact a hospice directly yourself, but the team will usually also ask for a referral from your doctor or nurse. For more information about hospice care and how to request a hospice stay through your GP please visit Hospice care – NHS
You can also find a hospice near you by using Hospice Care Finder | Hospice UK
In Scotland, Children Hospices Across Scotland (CHAS) also provides family support services for children, parents/carers, and siblings. For more information, please visit Children’s Hospices Across Scotland | CHAS
For more information about hospices and palliative care services in Wales, please visit Hospices and palliative care services – NHS Wales Executive
For more information about hospices and palliative care services in Northern Ireland, please visit End of life care and palliative care
There may be free health and wellbeing support services that you can access through your local authority.
To find out the details of your local council and who to contact for mental health support, please visit Find your local council – GOV.UK
EB Connect is a private online social collaboration platform for the global EB community that enables you to talk, share experiences, and make friends with other people in the global EB community.
For more information and to join, please visit EB Connect | DEBRA UK
Togetherall, is an award-winning mental health service offering safe and confidential peer and community support. Togetherall is available free to all DEBRA members. For more information or to access this service, please visit Togetherall online community support | DEBRA UK
Sane is a national charity that offers non-judgemental and compassionate emotional support over the phone or via email day every between 4pm and 10pm.
Please call 0300 304 7000 or visit Home – SANE for more information.
The mental health charity, Mind, offers an on-line peer to peer support community called Side by Side, where you can talk about your mental health and connect with others who understand what you are going through.
For more information, please visit Home – Side by Side
Hub of Hope is the UK’s leading mental health support database. It is provided by national mental health charity, Chasing the Stigma, and brings local, national, peer, community, charity, private and NHS mental health support and services together in one place.
For more information and to access their database, please visit Mental Health Support Network provided by Chasing the Stigma | Hub of hope
Qwell offers free digital mental wellbeing support for adults across the UK.
Please visit Home – Qwell for more information.
Contact is a charity that supports families with disabled children. One of the services they provide is Listening Ear, which provides 1-1 telephone appointments for parent carers looking for emotional support.
To access this and their other services, please visit Contact: the charity for families with disabled children
The Scottish Association for Mental Health is Scotland’s national mental health charity which operates over 70 services in communities across Scotland, providing mental health social care support, addictions, and employment services, among others. For more information or to access their support services, please visit samh.org.uk/find-help
Penumbra is another leading mental health charity in Scotland that provides dedicated services for people with mild to serious and enduring mental ill health. They support people on their journey to better mental health by working with each person to find their own way forward. For more information and to access their services please visit Service Locations – Penumbra Mental Health
Inspire is a charity that works to support people in Northern Ireland and Ireland living with mental ill health, intellectual disability, autism, and addictions to ensure they live with dignity and realise their full potential.
To find out more about the range of services that Inspire offers, including their free Advocacy For All service, please visit Home – Inspire Wellbeing
Other useful contacts
Many of these organisations below overlap and extend support services to both parents and children, younger and older adults. Some of these are also country specific but most apply to the whole of the UK unless otherwise stated.
Scope UK – Disability charity (England & Wales) – Provides information and emotional support, an online forum, and physical youth engagement services.
Start UK – Provides local community support, home visits, help to access services, young mothers support, and parent support groups to meet and talk.
Carers Trust – Assists unpaid carers to access support including grants, gift vouchers, tickets to events, and links to taking a break schemes.
Children 1st (Scotland)| Scotland’s National Children’s Charity – Helps with difficult children and provides a parent helpline (08000 28 22 33) for advice & support.
enabled2parent.org – Provides support, tools, and equipment for disabled parents including equipment that may help with carrying babies.
YoungMinds | Mental Health Charity For Children And Young People – Provides self-help guides for coping and seeking help for mental health issues, they also provide links to other charities and mental health helplines.
Place2Be – Improving children’s and young people’s mental health – Provides mental health support in schools through one-to-one and group counselling.
Action For Children | Children’s charity | For safe and happy childhoods – Protects and supports children and young people, providing practical and emotional care and support, local community services that include family aid, short breaks, youth employment support, youth leaving care support, and many more.
Stop.Breathe.Think – Provides eligible young people aged 8-21 with access to free 1-1 counselling sessions which run for 50 mins for 6 weeks with the same counsellor.
Sibs – provides support for siblings of disabled children aged 7-17, physically facilitating sibling and peer support groups for adult siblings (meet every 4-8 weeks locally).
Sense – Support for young carers and siblings of disabled people – Provides support for young carers and siblings aged 5-18, mostly online support which includes activities like book clubs, film nights, arts and crafts, games night, cooking, and wellbeing sessions, monthly in-person meet ups.
The Mix – Essential support for under 25s – Provides support services include counselling, support and general chat, and helpline services on topics including mental health, money, homelessness, finding a job, break-ups, drugs etc.
Mumsnet – A platform where mothers can talk about various topics such as parenting struggles, pregnancy, caring for children, relationships, and seek support for first time mothers.
Maternal Mental Health Alliance | Awareness Education Action – Provide links to support for mothers at different stages ranging from postnatal care to breastfeeding to baby loss.
Mothers for Mothers | Postnatal mental health support – Services include helpline and support, counselling, antenatal support, home visits, support groups, and group trips.
Petals Charity – Specialises in counselling after baby loss.
Men’s Group – The Leader In Online Men’s Groups & Men’s Community (mensgroup.com) – Supports men with tackling challenges including being a dad, breakups and divorce, and family issues through physical support groups, online discussions, and coaching.
Dad Matters – Supporting Dads in Greater Manchester to have the best possible relationships with their families. (available in certain regions) – Provides support and links to resources for dads dealing mental health and other life challenges.
Dads Unlimited – Supporting the emotional safety of men and those they care about – Provides paid counselling for dads.
Age UK | The UK’s leading charity helping every older person who needs us – Provides free advice line for the elderly, weekly friendship calls, befriending services, neighbourhood local support services, social activities. They also provide guidance on how to cope with depression and anxiety, bereavement and talking therapies.
Re-engage: Charity Supporting Older People Through Volunteering – Provides services including call companionship and other activity groups (activity group services are specific to Wales and England).
These organisations offer respite breaks or holidays for people living with disabilities, their families, and carers.
DEBRA Holiday Homes – DEBRA holiday homes are for people living with or directly affected by EB.
Over The Wall Children’s Charity – Provides a place (in-person residential camps or virtual camps) where children with serious illness and disabilities can be brave and have fun with others.
Honeypot | UK Children’s Charity – Offers residential breaks and support services for young carers aged 5-12.
Revitalise – A national charity that provides breaks and holidays for disabled adults and carers across two purpose-built centres.
After Umbrage – UK Charity – Caring for those that care – Provides free 4 day stays for unpaid carers of someone who has a life-limiting illness or has been recently bereaved.
Shining a Light on Suicide – Provides links to suicide prevention and bereavement services and offers on-line training to provide skills and techniques to support you in helping someone who is struggling with suicidal thoughts.
20 minute suicide awareness training – Suicide awareness and prevention training and signposting to resources and organisations that can provide support with specific mental health challenges including anxiety and depression.
Grassroots Suicide Prevention – Provides suicide prevention courses and the Stay Alive suicide prevention app.
Joanne Bharatan – EB has scarred me physically and emotionally | DEBRA UK
Henry George – EB dictates what I can do and when, everyday | DEBRA UK