Where to get support with a long-term condition

Long-term health conditions can bring all sorts of challenges. As well as coping with the physical demands, you might need financial advice, emotional support or help to manage lifestyle changes.

You may have been offered services when you weren’t ready for them or your situation may have changed. Don’t feel embarrassed about asking for help – it’s always okay to ask for support.

Your GP will probably be your first point of contact. Depending on your condition, they may refer you to specialist consultants or other services, including nurses, physiotherapists, dieticians and exercise specialists.

Ask your GP or practice nurse about any services you’re interested in or for suggestions of services that could help. For example, there may be charities, local support groups or tailored exercise classes that could help you. If you’re struggling with pain or fatigue, they may be able to refer you to a specialist clinic.

There are many charities and organisations that can offer support for specific conditions. They may have advice helplines, condition specialists, information resources, courses to help you manage your condition, support groups and online forums, practical aids or just someone to talk to.

These are some of the charities that may be able to help – there are many more:

• Alzheimer's Society
• Asthma + Lung UK
• Bladder and Bowel UK
• British Heart Foundation
• British Liver Trust
• Dementia UK
• Diabetes UK
• Macmillan Cancer Support
• MND Association
• MS Society UK
• National Kidney Federation
• Parkinson's UK
• RNIB
• Royal Osteoporosis Society
• Stroke Association and My stroke guide, an online support tool
• Versus Arthritis.

Sometimes it can be difficult to get the help you need to manage your condition. Patient support services can help you resolve problems and answer health-related questions. You can get information, advice and support from:

• Patient Advice and Liaison Services (PALS) in England and Wales
• The Patients Association
• the Patient Advice and Support Service in Scotland.

If you have concerns about your healthcare, you could also contact:

• your local Healthwatch in England
• the Board of Community Health Councils in Wales
• Healthcare Improvement Scotland.

You could also consider making a complaint. See our factsheet Complaints about health services for more information about how to do this.

It’s normal to feel worried if you have a long-term health condition. If you haven’t been offered any support, speak to your GP or healthcare team about what’s available.

If you’re feeling low or anxious, it can help to talk to someone you trust. Many charities have local or online support groups. You may find it reassuring to talk to others who are in a similar situation. You could also contact free helplines, such as:

• Samaritans 
• The Silver Line
• Breathing Space Scotland
• C.A.L.L. Wales.

Living with a long-term condition can affect your mental health. If you’re feeling anxious or depressed, talk to your GP. Our web page looking after your mental health has more on ways to keep yourself well and where you can find support.

If you need some help to look after yourself, contact your local council to arrange a free care needs assessment. This looks at your needs and how they might be met. For example, do you need help to wash or dress, or to get out and about?

Support might include things like adaptations to your home, disability equipment or visits from care workers.

If you need help with your personal care because of a long-term health condition, you may qualify for a disability benefit such as Attendance Allowance.

You might also be able to get help with extra costs, such as the cost of travelling to hospital appointments. Call our Helpline for more information or to arrange to speak to an adviser.