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Leaflet intended for patient use. Includes information on what the Adult Diabetes Psychology service is and how we can help.

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We have patient resources, referrer resources and various signposting information such as bereavement, elderly support and trauma.

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Includes activity updates, psychology services and initiatives and a "topic spotlight" on Trauma in Respiratory Health.

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Macmillan Prehabilitation resource for people with cancer

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Macmillan Prehabilitation resource for people with cancer

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Note: Currently these meet-ups are only held in the following;

Cardiff, Birmingham, Bradford, Dundee, Glasgow Coatbridge and Rochester.

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At Macmillan, we want to create a Cancer Community where people living with cancer can come together and find support in one another. Find a meet-up near you.

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Macmillan Welfare benefits service - ABUHB Healthboard

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Macmillan Welfare benefits service - ABUHB Healthboard

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Find local cancer support services - Macmillan Cancer Support

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Support from your work

If you work for an employer and take time off sick, you may be able to get sick pay. Your employer should also make reasonable adjustments to help you do your job during and after cancer treatment.

If you are self-employed you will not get sick pay. But you can still apply for other benefits if you cannot work or if your income decreases.

Access to Work provides advice and practical support if you have a long-term health condition that affects the way you do your job. This might include help with extra costs caused by your health condition.

Visit Access to Work, or NiDirect if you live in Northern Ireland.

Universal Credit

Universal Credit (UC) is a benefit for people under State Pension age who are on a low income or out of work.

To claim UC, you must:

be aged 18 or over - or 16 or over in certain cases

not be in full-time education or training - unless exceptions apply, such as you get Personal Independence Payment and are not able to work due to ill-health

not have more than £16,000 in savings (between you and a partner if you have one)

accept an agreement called a claimant commitment.

Income tax refund

You may be able to get a tax refund if you give up work, or if your income decreases. It is also worth checking whether you are still paying the correct amount of tax if your situation changes.

Your employer may be able to organise this. You can also apply for a tax refund online or contact HM Revenue and Customs (HMRC) on 0300 200 3000.

Keeping a diary

Recording the problems you have every day in a diary can help you show how a disability or illness affects you, or that you have problems looking after yourself.

This may help you complete a claim form for benefits that support people with a disability or illness. You can also send it as supporting evidence along with your claim form. Other evidence could include reports or care plans from your GP, doctor, nurse, or other health professionals.

Disability Living Allowance for Adults

Disability Living Allowance (DLA) for adults has been replaced by Personal Independence Payment (PIP).

DLA for adults was a benefit for people aged under 65 who had problems walking, moving around outdoors safely, or looking after themselves. You may still be getting DLA for adults if you live in England, Scotland or Wales and claimed before June 2013.

Industrial Injuries Disablement Benefit

You can claim Industrial Injuries Disablement Benefit if you were employed in a job, or on an employment training scheme, that either:

caused you to have a disease

caused you to have an accident.

Help with toilet needs

The National Key Scheme (NKS) offers people with a disability (including cancer) access to public disabled toilets across the UK. You can buy a RADAR (Royal Association for Disability and Rehabilitation) key for £4.75 (including postage and packaging) from Disability Rights UK or call 020 3687 0790.

In Northern Ireland, these keys can be bought at any local council office.

The Macmillan toilet card

Cancer treatment can affect the way the bowel or bladder works. Macmillan can send you a free toilet card and key ring, which explain why you may need to access a toilet urgently while out in public. We have a general version, and one for people who are experiencing late side effects after pelvic radiotherapy. Visit be.macmillan.org.uk and search for 'toilet card' to order these free resources.

State Pension

The State Pension is a regular payment you can get from the government when you reach State Pension age.

The State Pension age for men and women is increasing in stages.

We have more information about pensions, including private pensions.

Pension Credit

Pension Credit is a benefit for people who have reached a certain age and have a low income. To get Pension Credit, you or your partner if you have one, must have reached State Pension age. Your partner means your husband, wife or civil partner (if you live with them), or someone else you live with as if you were married.

You may be able to get help with housing costs. This could include rent or mortgage payments, council tax and home adaptations.

Universal Credit and Housing Benefit

Universal Credit has replaced Housing Benefit in most circumstances. If you are making a new claim, or there is a change in your circumstances, you may need to apply for Universal Credit instead of Housing Benefit.

Housing Benefit may help you to pay your rent if you are on a low income

Help with council tax or rates mortgage interest and bills

There are other benefits, loans and grants available to help with the costs of housing.

Local council tax reduction schemes can help towards the cost of your council tax if you are on a low income. If you live in Northern Ireland, you may be able to apply for help to pay your rates bill.

If you own your home, you may be able to apply for a loan from the government to help pay your mortgage interest payments.

You may also be able to get help if you need to adapt, repair or improve your home. The help available depends on where you live in the UK.

Carer's Allowance and Carer's Credit

If you look after someone with a lot of care needs, you could be entitled to Carer's Allowance.

If you are entitled to Carer's Allowance, or the carers element of Universal Credit, you will not be affected by the benefit cap.

Carer's Credit helps prevent gaps in your National Insurance record if you have to stop working while you are caring for someone else.

Bereavement benefits

Bereavement benefits can be paid to someone whose husband, wife or civil partner has died.

If your partner died on or after 6 April 2017, you can make a claim for Bereavement Support Payment up to 3 months after their death.

To get Bereavement Support Payment, you must have been under State Pension age when your partner died.

Macmillan Cancer Support Line

The Macmillan Support Line offers confidential support to people living with cancer and their loved ones. If you need to talk, we'll listen.

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Benefits and financial support - Macmillan Cancer Support

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If you work for an employer and take time off sick, you may be able to get sick pay. Your employer should also make reasonable adjustments to help you do your job during and after cancer treatment. If you are self-employed you will not get sick pay.

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This link provides access to multiple resources on bereavement and grief. Through this link you can also download the National Bereavement's services 'Living with grief: Finding support when someone close to you has died' leaflet which provides information on grief, and contact numbers and details for the National Bereavement Service.

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Grief is unique to each of us and everyone's experience will be different. There is both generic and specific bereavement support available to those who require it, whichever stage of grief is being experienced. Grief is the normal human response to the loss of someone, or even something, essential to us.

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Macmillan - Prehabilitation resources for healthcare professionals

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Macmillan - Prehabilitation resources for healthcare professionals

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We have tools and resources for professionals who support people with cancer rehabilitation and physical activity. Find out about our tools and resources.

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Dying matters is a website that contains resources around helping speak openly about grief and bereavement.

The link above provides access to podcasts, PDF's and print read leaflet, information about dying, and the planning ahead tool.

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Talking about death and dying can be tough. Our resources will help you, your family and friends to start the conversation.

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Fruitfly Collective is a UK based, non-profit organisation dedicated to supporting families affected by cancer through innovative resources that blend creativity, education, research and communication.

Their mission is to empower parents with a cancer diagnosis to navigate family life and support their children effectively.

They offer workshops and coaching programmes as part of their parent support. They also offer resources for children too including: Educational tools and booklets, and interactive activities.

They also offer professional support such as training for healthcare professionals, and educational resources.

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Cancer can or may affect your ability to work. Click this link to find commonly asked questions around work and cancer. This includes things like your legal rights and sick pay options.

Macmillan also provide booklets, and easy read booklets around work and cancer. They also provide booklets in a lot of other areas that may be affected by a cancer diagnosis and treatment.

Follow this link to find other booklets relating to different areas that may be affected by cancer:

Booklets and resources | Macmillan Cancer Support

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Children with Cancer UK is a leading national charity dedicated to combating childhood cancer.

They offer practical support to families affected by childhood cancer. This includes organising free days out and events, providing respite and a sense of normalcy during challenging times.

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To save children's lives, research is essential. Childhood cancers are different to adult cancers and need their own research. Most childhood cancers are unique to children.

At Children with Cancer UK we want to find safer, more effective treatments for all young patients. Cancer is still the most common medical cause of death in children and young people. Our focus as a children's cancer charity is to fund visionary research and bring the breakthroughs that will bring hope to children and their families.

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The Charity Fighting Childhood Cancer | Children With Cancer UK

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To save children's lives, research is essential. Childhood cancers are different to adult cancers and need their own research. Most childhood cancers are unique to children. At Children with Cancer UK we want to find safer, more effective treatments for all young patients.

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Teenage Cancer Trust is a UK based charity dedicated to providing specialised care and support for young people aged 13 to 24 diagnosed with cancer.

They offer specialised Hospital units, specialised nursing and support staff, and emotional and psychological support.

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We're the only UK cancer charity here to give every young person facing cancer the best care and support.

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Cruse offer face to face, telephone, online and email support for anyone who is grieving.

You can call their helpline on: 0808 808 1677

Or you can contact them through their webform to get email support.

You can also contact the Cruse Gwent service on 0300 1111 003

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We're here to help you no matter how long you've been grieving. Learn more about our different bereavement support services here.

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Cancer support UK is a charitable organisation dedicated to providing practical and emotional assistance to individuals affected by cancer across the United Kingdom. Their services are designed and delivered by individuals who have experienced cancer themselves, ensuring empathetic and relevant support.

They offer support groups, cancer kits, and innovative digital emotional support porgrammes.

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At a Loss is the UK's signposting and information website for people experiencing bereavement. They run a 'counsellor Live chat', which is a free service available Monday - Friday between the hours of 9am and 9pm (UK time).

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charity providing signposting to bereavement support uk wide

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AtaLoss.org is the UK's signposting and information website for bereaved people

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Find support services, information, helplines and resources to help you and family members at any stage in your bereavement. Easy to use filters tailor results to suit your needs and circumstances, location and age. Over 1400 listings including free and paid for services.

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Melo is a mental health and well-being service dedicated to supporting individuals living and working in Torfaen, Blaenau Gwent, Newport, Monmouthshire, and Caerphilly. It offers a comprehensive range of free self help resources, information and advice to assist users in managing their mental health and well-being.

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Headspace is a mental health and well-being platform that provides guided meditation, mindfulness exercises and mental health support to help individuals manage stress, improve focus, and enhance emotional resilience. It is designed for people of all backgrounds , whether they are beginners or experienced in mindfulness practices.

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Unlock hundreds of mood-boosting meditations, relaxing sleep exercises, focus music, and more with our biggest offer of the year.

It's the healthiest, happiest deal you'll find this Black Friday, and it won't last long.

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Meditation and Sleep Made Simple - Headspace

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Live a healthier, happier, more well-rested life in just a few minutes a day with the Headspace app.

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Mind is a mental health charity in the UK that offers support, information, and advocacy for individuals experiencing mental health challenges. Their services aim to ensure that no one faces a mental health challenge alone.

Mind also have support helplines:

Mind infoline - a free helpline offering confidential advice and information on mental health issues. Available via phone, email or text.

Legal line - provides guidance on legal rights discrimination, and employment issues related to mental health.

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We’re Mind, the mental health charity | Mind

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We're Mind, the mental health charity. We're here to make sure no one has to face a mental health problem alone.

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Macmillan cancer support is one of the UK's leading cancer charities. They provide emotional, practical and financial support to people affected by cancer. Their mission is to make sure that no one faces their cancer journey alone, offering a wide range of services to improve the lives of patients, their families and caregivers.

Anyone affected by cancer can access their services, this includes patients, caregivers, healthcare professionals, and family members.

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Do something Mighty in 2024

Take on a Mighty Hike to support people living with cancer. Choose from 15 routes and challenge yourself to a full or half marathon across some of the UK's most breathtaking landscapes! Sign up today and get 20% off with EARLYBIRD20.

Do something Mighty in 2024

Take on a Mighty Hike to support people living with cancer. Choose from 15 routes and challenge yourself to a full or half marathon across some of the UK's most breathtaking landscapes! Sign up today and get 20% off with EARLYBIRD20.

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Macmillan Cancer Support | The UK's leading cancer care charity

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Macmillan Cancer Support is here to listen, support you through treatment, and help with money. We fundraise so we can do whatever it takes.

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Maggie's is a UK based organisation that offer free emotional, practical and social support to people affected by cancer, including patients, families, and caregivers. Their centres offer a warm welcoming environment where individuals can access expert guidance, therapy, and community support.

They offer a number of services including:

1:1 support and counselling

Support groups

Stress management techniques

Guidance on financial aid

And much more.

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Maggie's | Everyone's home of cancer care

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Maggie's is a charity that provides free expert care and support in centres across the UK and online.

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ABUHB Clinical Psychology Cancer service

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ABUHB Clinical Psychology Cancer service

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We provide direct specialist psychological support for people who are experiencing significant and persistent distress associated with their cancer diagnosis.

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Referrals into our service can be made by professionals in the Cancer Services service only, please speak to your lead nurse or consultant if you would like to discuss a referral.

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Macmillan - Prehabilitation videos for people with cancer

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Macmillan - Prehabilitation videos for people with cancer

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Prehabilitation videos for people living with cancer - Macmillan Cancer Support

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Macmillan have collaborated with Bristol Myers Squibb and people living with cancer to produce videos covering prehabilitation. Prehabilitation helps people living with cancer prepare their body and mind for treatment.

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Lymphoma Action - Getting ready for treatment

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Lymphoma Action - Getting ready for treatment

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Corrin, diagnosed with diffuse large B-cell lymphoma

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Getting ready for treatment (prehabilitation) | Lymphoma Action

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Prehabilitation (or ‘prehab’) means getting yourself ready, mentally and physically, for treatment. This information is relevant whether you expect to have treatment soon or might need it in the future, including if you are on active monitoring (watch and wait).In addition to the information on this page, you might also be interested in our Preparing for Treatment Service.We have separate information to help you live well with and beyond lymphoma. On this pageWhat is prehabilitation?How might I benefit from prehabilitation?How can I get myself ready for treatment?Where can I find prehabilitation resources?

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Cancer research UK - preparing for treatment and life afterwards

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Cancer research UK - preparing for treatment and life afterwards

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Preparing for treatment and life afterwards (prehabilitation)

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There are things you can do to help you feel more in control of your health when preparing for treatment. This is called prehabilitation or prehab.

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The Sing With Us choirs are for anyone affected by cancer. It offers a space for people to have fun and make friendships whilst also providing peer support.

Click the link above to find your local Sing With Us choir

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We evaluate our services to make sure they meet the needs of the people who use them, identify ways to make them better, and make sure we're getting the best value for money.

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This program is a specialised structured fitness initiative designed to support individuals in their recovery from cancer.

This is a 12 week program and offers physical exercise, well-being strategies and community support to help individuals build their strength and confidence.

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Worldwide fitness support for those post-cancer

WHAT WE DO

The Battle Cancer Program is a specialized, structured fitness initiative designed to support individuals in their recovery from cancer. This 12-week program combines physical exercise, mental well-being strategies, and community support to help participants regain strength, confidence, and overall quality of life after undergoing cancer treatment.

​ ​

​

How DOES It Work?

The program is built on functional fitness principles, incorporating safe and scalable exercises that improve mobility, endurance, and strength. Each session is tailored to individual needs and abilities, ensuring a supportive and effective approach to rehabilitation.

Certified coaches lead the sessions, providing guidance on movement techniques, breathwork, and mindfulness practices. The goal is not only to rebuild physical health but also to foster mental resilience and emotional well-being.

WHO IS IT FOR?

The Battle Cancer Program is open to anyone who has been affected by cancer and has completed active treatment a minimum of 3months prior to the start of the program.

No prior fitness experience is required-every exercise is adaptable to different fitness levels and abilities.​

THE BATTLE CANCER PROGRAM

"I thought I was alone in struggling with life after cancer, but then I met these guys and realise I'm not doing too badly"

- Program Participant

LIFE-CHANGING RESULTS

We've seen some staggering results among the first wave of our Programs, with some participants improving their deadlift by up to 156%.

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Worldwide fitness support for those post-cancer WHAT WE DO The Battle Cancer Program is a specialized, structured fitness initiative designed to support individuals in their recovery from cancer. This 12-week program combines physical exercise, mental well-being strategies, and community support to help participants regain strength, confidence, and overall quality of life after undergoing cancer treatment.

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The velindre mindfulness app is available to download through the Apple app store, and on android via googleplay. This app is intended for all patients who may benefit from mindfulness, and relaxation exercises to improve mental health and well being, before, during and after treatment.

This app contains a series of mindfulness and relaxation exercises.

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Silver cloud is an easy to use and interactive online programme based on CBT that is designed to support your mental health and well - being. You can find information and support on a variety of topics through this link.

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Here you can find out about activities and groups in Torfaen area. Click the above link to find out what is going on in your local area.

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Connect Torfaen - Connecting you to your community.

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The community platform where you can meet friends, make connections and share information.

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Move better wales is a health and well-being initiative focused on improving, mobility, physical fitness and overall well-being for individuals of all ages across wales.

They provide movement and mobility programs, injury prevention and recovery, and workshops and coaching as well as well-being and lifestyle support.

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The cancer voices community brings together individuals with a personal experience of cancer.

When you are part of the cancer voice community you can get involved in a variety of projects, discussions and events.

Watch the Cancer Voices video here: https://youtu.be/nqcAEWoKOOw

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Cancer Voices Community - Macmillan Cancer Support

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Watch our video to meet the community that works with us and influences what we do.

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Life After Cancer brings people together who have finished cancer treatment to form support groups. with an aim to increase their physical, mental, emotional and social well being.

Life after Cancer offer support through:

Support Groups | Life after Cancer

One-to-One Coaching | Life after Cancer

Click the links above to find out more.

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Life after Cancer | Free Support Groups | Coaching | United Kingdom

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Supporting you to build a positive life after you have completed cancer treatment. Life after Cancer supports people who have finished cancer treatment, with an aim to increase their physical, mental, emotional and social wellbeing. We want everyone to build a positive life after cancer.

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We can all get caught in a spiral of worrying about the future and what we think might happen, which usually goes away quickly.

But if it becomes a cycle of anxiety, it can affect our mental wellbeing, especially if we're already struggling with mental health issues.

Luckily there are ways to manage uncertainty that reduce worry and stress.

Here are 10 things you can do to help deal with change and look after your mental wellbeing in the face of uncertainty.

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How to deal with change and uncertainty - Every Mind Matters

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See the 10 things you can do to look after your mental health and wellbeing in the face of change and uncertainty.

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We all go through difficult times, and it can be a healthy reaction to feel negative emotions when facing challenges.

There's no single "right way" to react, and some of us are more deeply affected by events than others. Everyone is different.

Our genes, life experiences, upbringing and environment all affect our mental health and influence how we think and respond to situations. It can also depend on how well other parts of our life are going or how supported we feel.

Being aware of these factors may make it easier to understand when we, or someone we care about, are struggling.

Find out more about what can affect our mental health, as well as lots of things you can do and organisations that can help.

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Dealing with life's challenges - Every Mind Matters

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We all go through difficult times, and different things can affect our mental health. Being aware of these factors may make it easier to understand when we or someone we care about is struggling.

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Get help and advice about money, work, and benefits

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Whatever type of cancer, whatever stage you've been diagnosed at, find people just like you in our thriving community.

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Whatever type of cancer, whatever stage you've been diagnosed at, find people just like you in our thriving community.

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Peer Group Development

The second role in the team is that of our Deaf Cancer Peer Group Development Officer.

Their role involves supporting and encouraging the establishment of peer support groups, for Deaf people affected by cancer.

The Group Development Officer also offers support and encouragement to Deaf volunteers, who themselves want to support Deaf people affected by cancer and support them on their cancer journey.

Self Help UK want people to be able to get involved in establishing peer support groups across the UK.

We already have a well-established online Deaf Macmillan Volunteer Group and a Deaf Cancer Support Group.

If we can support more groups to set up across the UK that means more Deaf people can finally have face to face in-person support within a peer support group.

At the moment, this happens online via remote video-call.

Self Help UK hopes it won't be long before we have peer support groups available across the UK.

Read More

Deaf Cancer Peer Group Support

The Peer Group Development Officer is looking to set up peer support groups across the UK including Northern Ireland. Deaf people often face barriers to communication. Self Help UK wishes to change this and as a Peer Support Group Volunteer, you can be part of this change. Deaf people need support in the format that is accessible to them, be that in British Sign Language or lip-reading. By having access to local support groups, you can empower them to learn more about their cancer journey and provide support - emotional and practical, help finding information, and some advocacy support too.

This can only be done by enough volunteers from all areas of the UK. Please be aware that subject to satisfactory checks and DBS checks, you will be added to the Deaf Macmillan trained volunteers team after training.

For more information or to register your interest in volunteering, please fill out our volunteer application form

We are a Deaf run project providing emotional support to Deaf people experiencing cancer

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The Peer Group Development Officer is looking to set up peer support groups across the UK including Northern Ireland.

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Support services offered by OUTpatients for LGBTIQ+ people affected by cancer.

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Ray Of Light cancer support is a registered charity dedicated to providing free support to patients , carers, friends and families affected by cancer in Wales.

They offer a multitude of services such as;

Peer support & Group meetings

Green social prescribing groups

One-to-One support

Telephone befriending

Social Horticultural Therapy

Signposting Confidential online advice and support

They also run a choir called the Ray of Light Warblers to promote social engagement and joy through group singing activities.

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Move against cancer is an initiative by the registered charity 'MOVE', dedicated to supporting and inspiring individuals affected by cancer to incorporate physical activity into their lives. Some of the key initiatives include:

5k your way - a community based program encouraging those living with and beyond cancer , along with their families, friends, and healthcare professionals, to participate in local parkrun events by walking, jogging, running etc.

Newport 5k your way:

PARKRUN LOCATION:

Tredegar House, Pencarn Way, Coedkernew, Duffryn, Newport NP10 8YW

5KYW Meeting Point:

By the ramp to the brewhouse coffee shop within the grounds of Tredegar House

Online support programme - this is an 8 week 1:1, virtual support program tailored for young people ages 13-30 who are living with and beyond cancer, aiming to provide personalised guidance on integrating physical activity into their recovery and daily routine.

Resource hub - resources designed to educate, inspire, and empower those affected by cancer.

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Maggie's Outreach in Abergavenny is held in the Tithe Barn Community and Wellbeing cafe.

See the above link for the full address details.

The sessions here run on the first Tuesday of every month from 2pm-4pm.

If you do decide to drop in, you can also speak to a cancer support specialist who will answer any questions you have, and help you find the support you need.

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Find local businesses, view maps and get driving directions in Google Maps.

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Mind also have information around bereavement and grief and self care. They have lots of information and links for organisations with specialsied services that could help you cope with bereavement.

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Community Neuro Rehab website link

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Aneurin Bevan University Health Board’s Community Neurological Rehabilitation Service offers rehabilitation support to adults in Gwent and Caerphilly after their discharge from hospital following stroke or brain injury, and for psychological support of non-epileptic seizures.

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Neurostute booklet V2 for CNRS.

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Functional Neurological Disorder (FND) – A Patient’s Guide to FND

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Check out the NEW Functional Neurological Disorder (FND) Formulation Tool

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Management of functional communication, swallowing, and cough related disorders

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Management of functional communication, swallowing, and cough related disorders

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Live well with pain - 10 foot steps to living well with pain. This is self help guidance for people living with persistent pain.

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Croeso i Camau’r Cymoedd | Welcome to Valleys Steps

What would you like to see from us? Submit your suggestions here

Learn about Mindfulness & Stress Management Online

Join one of our up-coming online workshops, get in touch about our workplace wellbeing modules or even book a place on our Mindfulness-Based Cognitive Therapy for Life course

Free Community & Online Mindfulness & Wellbeing Courses

Online & Open Access

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Experiences from our Course Attendees

"I can't believe these online workshops are free, they've really given me so much insight into stress, anxiety and low mood and helped me learn how to cope with the syptoms of these feelings."

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Experiences from our Course Attendees

"I love the course and I will continue to join in, I appreciate all you support. Thank you."

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Experiences from our Course Attendees

" I have gained great benefit from attending the Stress Control course and often use the relaxation track. I have noticed the difference from when I started the course and I feel much better than I did at the beginning."

Would you like to attend one of our workshops? Browse our full list here

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Valleys Steps | Free Mindfulness and Stress Control Courses

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At Valleys Steps we help anyone from across Rhondda Cynon Taff, Merthyr Tydfil & Bridgend to learn effective ways of managing life?s problems

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Tame the beast - rethinking persistent pain 

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Tame the beast - rethinking persistent pain 

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Read the transcript >

Once upon a time, all the lands were fraught with persistent pain. So widespread was this affliction that one in four people experienced it. The pain lasted more than 3 months. It shadowed their daily lives... held them back from everyday activities ... and the interventions they tried proved useless...

Hey, pain! Go away! We've tried it all But still you stay! Moving less, Taking pills, Knives and needles

Hey, pain! Go away! We've tried it all But still you stay!

But the pain remains like a loyal companion.

The peoples' hopes faded and they became resigned to living with the pain - only now, the pain was a beast! Then, along came a group of researchers, of which I am one. "Back off, big fella!" I'm Professor Lorimer Moseley and I'm a pain scientist.

Pain scientists are starting to think differently about pain and its causes. And we're making exciting discoveries...

Like how the way you think about your pain can change the way it feels. Over the next few minutes, I'll help you to understand your pain. Understanding is important because it can change how much things hurt and how much your body can do... And can help you to tame the beast.

First, trust me about this... Pain is not an accurate measure of tissue health. Pain is a protector. By making unpleasant feelings, your brain changes your behaviour - so you can avoid injury or your tissues can heal. Sometimes pain is not helpful - like phantom limb pain. You don't expect a missing limb to ache. But it does and the pain is very real.

So how do we explain this? Pain is a warning signal from your brain that depends on credible evidence to say your body needs protecting. Sometimes it's too protective and you get unnecessary warning signals. Pain scientists now understand that there are many ways our nervous system ends up producing unnecessary warning signals. Take conditioning for example.

Think of Pavlov's dog... Every time food was offered, Pavlov rang a bell. Of course, the dog would salivate seeing the food. This went on for a while. Eventually the dog was conditioned to salivate for the bell alone. Conditioning is just one of the ways your body learns pain. And the longer your nervous system produces pain, the better it gets at producing it. Your body learns pain

So what feeds this beast? Let's look at how pain works... In your body's tissues, there are specific neurones, which normally only respond to harmful stimuli. - whether mechanical, chemical or thermal. When they are activated, they send a warning signal to your spinal cord, which can in turn send a signal to your brain. This activity in neurones is called 'nociception' and it's happening all the time. But it only sometimes results in pain. Most of the time, the brain protects you with other things like movement. Once the warning signal reaches the brain, the brain makes sense of it based on the information arriving and the vast amount already stored. If there's reason to think protection is required, then your brain makes pain.

One of our amazing discoveries is that you can have pain without any physical stimuli. Thoughts and places might activate the warning signals. And the pain feels exactly the same. But it's not just your brain - your spinal cord also learns how to generate unnecessary warning signals.

So how do you know when your nervous system is learning pain? You may notice your pain spreads or comes on without warning. Your body feels odd and it's hard to move properly. Your pain changes quickly with your mood and small annoyances can set it off. Old injuries start to hurt again. You're more sensitive to stimuli. And the longer the pain goes on, the more all of this occurs.

The old way we understood pain left many sufferers feeling like no one believed it was real. Or that for it to hurt so bad, there must be a tissue problem. But we now know how persistent pain happens.

So how can you tame the beast?

Pain is a very personal thing. There's no one size fits all solution. And while you probably have well thought out coping strategies, it's time to take a new approach to dealing with and reducing your pain - one that focuses on retraining your pain system. This might mean testing yourself physically and moving more than you normally would. Being honest about your current attitudes and beliefs can also help. As can asking your health professional new questions.

How do I know if my pain system is being over protective? How can I retrain my pain system to be less protective? How do I know if I'm safe to move?

So be brave and have hope! Because - it is possible to tame the beast!

Visit our website for more information and questions to ask your health professional. tamethebeast.org

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Once upon a time, all the lands were fraught with persistent pain. So widespread was this affliction that one in four people experienced it. The pain lasted more than 3 months. It shadowed their daily lives... held them back from everyday activities ... and the interventions they tried proved useless...

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Research actually shows that chronic pain is experienced by a significant portion of individuals with a trauma history, ranging from 20% to 80%, and approximately 10% to 50% of people with PTSD also report living with chronic pain. Furthermore, patients with chronic pain who have a background of trauma tend to experience more significant impairments in their functional status, express higher levels of distress, and exhibit poorer responses to medical treatments.

Fibromyalgia is a complex and often misunderstood chronic disorder characterised by widespread musculoskeletal pain, tenderness, and a range of other symptoms. While the exact causes of fibromyalgia remain elusive, researchers have been exploring various factors, including the role of trauma, both physical and psychological, in the development of this condition. This mutual relationship between the two conditions raises an intriguing question: could they share a common underlying cause?

What is Fibromyalgia?

Before we explore the relationship between trauma and fibromyalgia, it's essential to understand what fibromyalgia is and what sets it apart from other chronic disorders. Fibromyalgia isn't classified as an autoimmune disease, joint or muscle disorder, or an inflammatory condition. Despite the often severe pain experienced in fibromyalgia, there is no discernible evidence of physical tissue damage within the body. Instead, fibromyalgia is categorised as a nervous system disorder, where pain signals are transmitted and processed in an abnormal manner.

People living with fibromyalgia experience this chronic pain throughout their bodies, often accompanied by symptoms such as:

1. Heightened Sensitivity to Pain: Those with fibromyalgia often experience an increased sensitivity to pain, where even minor sensations can become intensely discomforting.

2. Muscle Stiffness: Persistent muscle stiffness is a common symptom, making everyday movements and activities more challenging.

3. Sleep Struggles: Many people with fibromyalgia encounter difficulties falling asleep or staying asleep, resulting in profound fatigue and exhaustion.

4. Cognitive Hurdles (Fibro-Fog): Dubbed "fibro-fog," this phenomenon involves cognitive challenges such as trouble concentrating or remembering things clearly.

5. Headaches: Headaches are a frequent companion of fibromyalgia, adding to the overall burden of discomfort.

6. Irritable Bowel Syndrome (IBS): Some individuals with fibromyalgia also contend with irritable bowel syndrome (IBS), a digestive condition characterised by abdominal pain and bloating.

7. Emotional Impact: Feelings of frustration, worry, or low mood are often intertwined with the experience of fibromyalgia, affecting one's overall emotional well-being.

It's important to note that the symptoms of fibromyalgia can be quite variable. They may ebb and flow, with periods of improvement followed by exacerbation. This unpredictability adds to the complexity of managing this condition.

The exact mechanisms behind these symptoms are still a subject of ongoing research, however someone with PTSD or C-PTSD might find the above list of fibromyalgia symptoms eerily familiar. This is because many of these other symptoms also closely mirror the physical and emotional responses observed in cases of trauma, PTSD, and C-PTSD.

The Trauma Connection

While the exact cause of fibromyalgia is still unknown, it is believed to be associated with irregular levels of specific brain chemicals and alterations in how the central nervous system (comprising the brain, spinal cord, and nerves) manages pain signals throughout the body.

A growing body of evidence suggests that trauma, both physical and emotional, may be linked to the onset and exacerbation of fibromyalgia symptoms. Several studies have explored this connection, highlighting the role of trauma in the development of this complex condition.

One significant study from 2018, which reviewed 51 different studies, found that many individuals living with fibromyalgia reported a significant association between the onset of their symptoms and experiences of emotional or physical trauma. While the data quality did not allow for definitive conclusions, it was noted that emotional trauma appeared to be more common than physical trauma in these cases.

People with both PTSD and fibromyalgia have noted that their pain often appears distinct from their trauma, suggesting the involvement of an underlying mechanism, possibly related to central nervous system sensitisation.
PTSD is recognised for its capacity to sensitise the nervous system, so the strong correlation between PTSD and fibromyalgia pain comes as no surprise.
When triggered, both PTSD and fibromyalgia activate the body's fight-or-flight response and prompt the release of stress hormones like cortisol, which sensitise nerves.

This heightened sensitivity of nerves can lead to the transmission of pain signals even in the absence of any physical source of pain.

The Impact of Trauma

Understanding how trauma contributes to fibromyalgia involves examining how the body responds to extreme distress. Trauma can trigger a series of neurobiological responses that affect brain structures, alter neurological synapses, and potentially modify gene expression. This cascade of changes may disrupt central nervous system communication, leading to skewed pain perception and contributing to other common fibromyalgia symptoms like cognitive impairment, sleep disturbances, and fatigue.

Childhood Trauma and Fibromyalgia

While fibromyalgia isn't exclusively linked to childhood trauma, there is evidence suggesting a connection between childhood traumatic events (CTEs) and fibromyalgia. A small 2018 study found that CTEs were significantly more common among individuals living with fibromyalgia. In 2020, a large-scale population-based study reported that mistreatment in childhood was associated with a significantly higher risk of developing fibromyalgia later in life. Another study in 2022 found that 88.2% of people with fibromyalgia had experienced childhood trauma.

Researchers believe that exposure to significant stress during childhood can negatively affect the development of one's stress response, increasing vulnerability to stress-related disorders later in life.

Fibromyalgia and Mental Health

It remains unclear whether fibromyalgia is a manifestation of chronic pain in PTSD, if PTSD exacerbates pre-existing fibromyalgia, or if both scenarios can occur, but there appears to be a clear link between the two.

It's also worth mentioning that around 25% of people diagnosed with fibromyalgia also have accompanying depression at the time of diagnosis. Furthermore, a significant portion, ranging from 50% to 75%, of fibromyalgia patients have a history of depression over their lifetime. Additionally, the lifetime occurrence of an anxiety disorder among fibromyalgia patients is approximately 60%.

Living with chronic pain can undoubtedly take a toll on one's mental health, and the experience of fibromyalgia itself can lead to rapid mood changes. Research suggests that intense feelings of sadness, fear, anger, and guilt may be more common in fibromyalgia due to changes in the brain that increase sensitivity to pain. This heightened sensitivity can extend to emotional responses, making individuals more susceptible to intense emotions when faced with challenging situations.

Managing Fibromyalgia

Given the multifaceted nature of fibromyalgia and its potential connections to trauma, there is no one-size-fits-all treatment approach. Successful management typically involves a multidisciplinary approach, which may include

Lifestyle Adjustments: This entails the adoption of exercise routines and relaxation methods.

Therapeutic Interventions: Talking therapies like cognitive-behavioural therapy (CBT) and acceptance and commitment therapy (ACT) can be beneficial.

Medication: In some cases, antidepressants may be prescribed.

Exercise, in particular, offers numerous advantages for individuals living with fibromyalgia, as it can help mitigate pain and improve overall well-being.

Conclusion

In the complex puzzle of fibromyalgia, trauma emerges as a piece that warrants attention. While not everyone with fibromyalgia has a history of trauma, research suggests that trauma, both physical and emotional, may play a role in the development and exacerbation of this challenging condition. Understanding this connection can help healthcare providers better support individuals living with fibromyalgia and guide future research into more effective treatments, but it also emphasises the importance of gaining a deeper understanding of and addressing stressful life events in individuals coping with chronic pain and the pain-related issues that people who have experienced trauma may face.

In the journey to manage fibromyalgia, a holistic approach that addresses both physical and emotional well-being is crucial. By recognising and addressing the potential impact of trauma, people living with fibromyalgia can work toward improved pain management and a better quality of life.

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Research actually shows that chronic pain is experienced by a significant portion of individuals with a trauma history, ranging from 20% to 80%, and approximately 10% to 50% of people with PTSD also report living with chronic pain.

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Useful information for people with Chronic or persistent pain and the drug driving laws surrounding pain medication.

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Self management tools for persistent and chronic pain

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Pete Moore, Pain Toolkit - info@paintoolkit.org

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Pain Self Management by Pete Moore | Pain Toolkit

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Is pain self management your first choice, or last resort? The Pain Toolkit by author Pete Moore, helps people all over the world self manage persistent pain.

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The British Pain Society aims to promote education, training, research and development in all fields of pain. It endeavours to increase both professional and public awareness of the prevalence of pain and the facilities that are available for its management. The Society is involved in all aspects of pain and its management through the work of the Council, various Committees, Special Interest Groups and Working Parties and via its publications, Annual Scientific Meeting and educational seminars.

The British Pain Society has a membership of over 750 and is involved in all aspects of pain and its management through the work of the Council, Committees and Working Parties. Further information can be found within the About section.

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An alliance of professionals advancing the understanding and management of pain for the benefit of patients

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The British Pain Society aims to promote education, training, research and development in all fields of pain. It endeavours to increase both professional and public awareness of the prevalence of pain and the facilities that are available for its management.

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Persistent pain affects 30-50% of us

Its impact is significant, negatively affecting our physical and mental health, our social and home lives and our ability to stay in work.

There are a lot of misconceptions about persistent pain

Common public understanding is significantly out of step with current scientific thinking.

Understanding pain is important

How you think about your pain can change the way it feels and how you respond to it.

Healthcare design and delivery doesn't always reflect the best scientific understanding

It often fails to fully embrace the complicated biological, psychological and social nature of pain.

Change is needed

Where better place to start than raising awareness, facilitating a better understanding and empowering people to take back control?

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Its impact is significant, negatively affecting our physical and mental health, our social and home lives and our ability to stay in work. Common public understanding is significantly out of step with current scientific thinking. How you think about your pain can change the way it feels and how you respond to it.

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Breathworks - Mindfulness and relaxation exercises 

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Breathworks - Mindfulness and relaxation exercises 

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Free Guided Meditation and Mindfulness Practices

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This selection of free, short guided meditations and mindfulness practices are an effective introduction to mindfulness.

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Do's and Don'ts when managing lower back pain

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Understand what self management of CRPS is and how to manage your own condition

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International Association For The Study Of Pain

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International Association For The Study Of Pain

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International Association for the Study of Pain (IASP)

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Promoting Chronic Pain Self-Management Education - International Association for the Study of Pain (IASP) Promoting Chronic Pain Self-Management Education | IASP

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Successfully managing chronic pain requires education and self-mastery of key skills.

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Leaflet with general guidance for family around individuals experiencing delirium in Critical care.

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Pain concern have free downloadable resources for a number of topics surrounding chronic pain e.g manage your pain leaflet, stress pain and relaxation leaflet, neuropathic pain leaflet etc....

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We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking "Accept All", you consent to the use of cookies. Read More...

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Find information and resources to help manage your pain. We work to improve the lives of people living with pain and those who care for them.

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Functional Neurological Disorder - management for children & adults 

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Functional Neurological Disorder - management for children & adults 

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General Mental Health information & where to find support 

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General Mental Health information & where to find support 

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Link to the NHS adult diabetes website.

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Welcome to the Aneurin Bevan University Health Board Diabetes Service

We hope you find this webpage useful and that it helps you to find information to support you or someone you know to manage diabetes.

The integrated diabetes team provide specialist care, education, and support to people in Gwent and South Powys.

We aim to work with you and your family/carers, to support you in whatever you do, be it college, University, employment, or other life events such as pregnancy, illness or travelling by giving you confidence in your ability to manage your glucose levels to achieve health and wellbeing.

The diabetes team work with your General Practitioner practice and in the hospital so wherever you receive your diabetes care and reviews, our mission is to help to keep you well by being a source of expert knowledge for you and for other professionals who may need help to look after you plus being there to help you if you are unwell.

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Welcome to the Aneurin Bevan University Health Board Diabetes Service We hope you find this webpage useful and that it helps you to find information to support you or someone you know to manage diabetes. The integrated diabetes team provide specialist care, education, and support to people in Gwent and South Powys.

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Patient Information (Sylwch, nid yw pob adnodd ar y dudalen hon ar gael yn Gymraeg. At hyn, mae dolenni i sefydliadau allanol nad ydynt, o bosib, ar gael yn y Gymraeg. Os oes angen dogfen wedi’i chyfieithu arnoch, cysylltwch â abb.diabetesservicepadletinformation@wales.nhs.uk)      (Please note not all resources on this page are available in Welsh. There are links to external organisations which also may not be available in Welsh. If you require a document to be translated, please contact ABB.DiabetesServicePadletInfo@wales.nhs.uk)

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Padlet created for patients with diabetes, contains lots of information and resources around diabetes.

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A top tips style sheet on reducing the mental load for people with type 1 diabetes. Intended for patient use.

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Tips to reduce the mental load for people with T1 Diabetes

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Diabetes burnout leaflet - Type 1 diabetes

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Diabetes burnout leaflet - Type 1 diabetes

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Really useful resource on understanding diabetes burnout. Some people experience diabetes distress, which relates to feeling overwhelmed by the relentlessness of diabetes. This can lead to diabetes burnout, which then affects management of the condition.

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The course can help you to take greater control of your actions, so that day-to-day life becomes less distressing and more enjoyable. You will learn practical and effective ways of dealing with thoughts and feelings that may be causing distress.

The course has been developed for you by Dr Neil Frude and will help you find out what is really important to you and give you the skills to be able to live your life with more confidence and a greater sense of purpose.

Start the course by clicking on the ACT 1 video below. There are four videos each lasting around 40 minutes. You can pause at any time and come back to them if you need to take a break. We recommend having a few days between each video so that you can practice the learning. For each of the videos there is a guide you can download, print or take notes on, and also some audio exercises that you can listen to.

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This free course is designed to help you improve your mental health. Feeling worried or anxious can have a big impact on your health and for some people life can be particularly difficult.

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Information for patients about needle phobia, and how they can go about managing this when having a procedure that involves needles.

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A really helpful website, for both clinicians and patients to learn more about diabetes. Includes lots of helpful resources.

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Diabetes UK - Know diabetes. Fight diabetes. | Diabetes UK

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We are Diabetes UK, the leading charity for people living with diabetes in the UK. Our vision is a world where diabetes can do no harm.

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What we do in Wales Over 222,000 people are living with a diabetes diagnosis in Wales and this number is set to continue to rise. Our vision is a world where diabetes can do no harm. We are working to support that vision in Wales by raising awareness, improving care, and providing help, support, and information for people with diabetes and their families across Wales.

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Breakthrough T1D (formerly JDRF) website

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Breakthrough T1D (formerly JDRF) website

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Breakthrough T1D is the leading global type 1 diabetes (T1D) research and advocacy organization helping make everyday life with T1D better.

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Welcome to Stress Control

⚠️ Important Announcement

This website will be moved on 14th April.

From now on, please use our new site: www.stresscontrolclass.com

If you're an Enhanced Stress Control Member with a current active membership, you should have received an email with instructions on how to move your membership over to the new site.

If you haven't received this email, or if you've had any trouble getting registered, please send an email to info@stresscontrolathome.com and we'll be happy to help.

Thank you for your continued support. We hope you'll enjoy the new site!

Please follow us on and to keep in touch.

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This website will be moved on 14th April. From now on, please use our new site: www.stresscontrolclass.com If you're an Enhanced Stress Control Member with a current active membership, you should have received an email with instructions on how to move your membership over to the new site.

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Websites to access for support with pychosexual issues

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DigiBete is a website full of information and resources for young people with type 1 Diabetes.

Digibete is a video platform and app and is a useful tool for young people's management of their diabetes.

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Welcome to DigiBete, a place to help young people, families and communities to manage Type 1 Diabetes. DigiBete is a video platform and app, and is a one-stop-shop for young people's diabetes management. It is a social enterprise funded by NHS England with all content clinically approved by the Diabetes Team at Leeds Children's Hospital. We are here for you 24/7 whenever you need us. If there is anything you'd like to see on the site then get in touch with us at: hello@digibete.org

About Us Community Page

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Welcome to DigiBete, a place to help young people, families and communities to manage Type 1 Diabetes.

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Provides information for patients around energy limiting conditions such as Long Covid, Fibromyalgia etc. Also provides different exercises for patients to do as well as explaining concepts like the Boom and Bust cycle.

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Energy management workshop part 1 slides

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Energy management workshop part 2 slides

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Energy management workshop part 3 slides

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Fibromyalgia workshop slides

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This document offers practical advice for people recovering from illness for managing long term health conditions.

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Long covid & Post viral illness workshop slides

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Managing Myalgic Encephalomyelitis/Chronic Fatigue

Syndrome.

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Service Introduction Leaflet WELSH 02.25

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This document provides guidance on talking to your child about weight. Aims to help parents and care givers talk to their children about weight in a positive way.

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We support anyone affected by Huntington's disease from entire families to carers and from healthcare professionals to employers and teachers.

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Link to Cardiff Universities Huntington's disease centre website.

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We are one of the leading centres in the UK for initiating and co-ordinating research into Huntington’s disease.

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For families affected by Huntington's Disease 

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For families affected by Huntington's Disease 

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The Hiraeth team provide trauma and relationally informed care to people who have complex and a wide range of mental or physical health needs under ABUHB Mental Health and Learning Disabilities Division. We aim to help our Mental Health teams to provide such care for the person they support as close to home as possible.

Hiraeth - A spiritual longing for a home which maybe never was. Nostalgia for ancient places to which we cannot return. It is the echo of lost places in our soul's past and our grief for them. It is the wind, and the rocks, and the waves. It is nowhere and it is everywhere.

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The Hiraeth team provide trauma and relationally informed care to people who have complex and a wide range of mental or physical health needs under ABUHB Mental Health and Learning Disabilities Division. We aim to help our Mental Health teams to provide such care for the person they support as close to home as possible.

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Link for the adult weight management website.

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How to access further support If you have explored the above options and still need further support from the Health Board weight management services you can read more about these services in the 'About us' section below. The easiest way to refer to the Weight Management Service is to fill in our online referral form.

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Child & Young person weight management website

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Child & Young person weight management website

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Link to the children and young person weight management page.

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‘Connect’ Child and Young Person Weight Management Service

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CONNECT is the first Tier 3 Specialist Weight Management Service for Children and Young People (CYP) in Wales, covering the whole of Aneurin Bevan Health Board. We are a team of professionals working together with CYP and their families to help manage their weight and improve their physical and emotional health. The team is made up of a consultant paediatrician, specialist dietitian, specialist nurse, clinical psychologist and a therapy assistant practitioner.

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Change for life website - this website provides lots of information around healthier meals and snacks for individuals and families.

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Discover our range of recipes - find loads of simple, affordable, tasty, healthier recipes to inspire you and your family.