Living with a long-term health condition or disability

Living with a long-term condition or disability

You may find that having a long-term condition will affect many areas of your life such as family, relationships, work, housing or accommodation, mental health, education and your finances.

Self-care or self-management means taking responsibility for keeping yourself healthy, thinking carefully about lifestyle choices and paying attention to how you feel on a day to day and long-term basis. For those who have a disability or have been diagnosed with a long-term condition or illness, there may be particular challenges to looking after yourself, you may have to overcome the challenges that your condition brings in terms of physical and mental health and it may mean adapting your lifestyle to live well. Most adults need to undertake a minimum of 2.5 hours of physical activity a week.

Information NOW has more information on looking after your health.

Reablement

If you have a sudden onset health problem, for instance a stroke or heart attack then once you have been stabilised in hospital you will be discharged with a support package of care for 4 or 6 weeks. This may include help with washing and dressing at home, help with cooking and domestic activities as well as benefits advice if you will be unable to return to work for a while. In addition, you will probably receive support from a community team including physiotherapists, occupational therapists, speech and language therapists. Sometimes you may be contacted by the palliative care team, a dietitian or a psychologist. In particular, occupational therapists and physiotherapists may be the health professionals to speak to about getting fit and active again.

Adult Social CarePoint can discuss your needs with you. Occupational Therapists work in partnership with home improvement teams and housing associations to adapt your environment so that you can remain safely at home. Occupational Therapists assess and provide equipment and minor adaptations to enable people to fulfil their potential for independence.

Rehabilitation

Whether you have a disability from birth or later in life, you should be able to access support and advice from one of the rehabilitation team from time to time.

Rehabilitation teams are often based in a hospital but there are a number of charities that employ their own physiotherapists and occupational therapists to meet your needs. There are also a number of private businesses that offer specialist rehabilitation services.

Physiotherapy

Physiotherapists help with a range of issues including problems with the bones and soft tissue eg back or neck pain; problems with movement associated with the nervous system as well as the heart and circulation and breathing. A physiotherapist can give advice on using equipment such as a walking stick to help get around more easily.

Tyneside Musculoskeletal service offers advice on self-care and access to expert opinion, diagnosis and treatment of a variety of muscle, joint and soft tissue conditions and chronic pain. This includes: back, neck, knee, hip, ankle and elbow pain, arthritis, persistent pain and health in pregnancy.

Occupational therapy

. An occupational therapist can work with you to find ways of carrying out everyday tasks, such as dressing, washing, making a hot drink or shopping. They help you to become as independent as possible so you can continue with hobbies, get fit again or return to work.

Specialist Nurses

Specialist nurses have specialist knowledge and skills and have a vital role in the care of people with a range of conditions including: Parkinson’s, multiple sclerosis, diabetes, asthma, CoPD to name a few. They also offer support to families of people with a condition. As specialists in a particular condition, they can advise other health and social care staff involved in a person’s care, who may not have specific knowledge. In some cases they can also prescribe medication for people.

Palliative Care

Specialist palliative care teams have been developed to improve quality of life for patients with complex needs. This includes: improving symptoms such as pain management and reducing the emotional concerns of family caregivers.

Equipment and adaptations

Disability North give information and advice on disability equipment and activities, benefits and Direct Payments as well as advising on many other aspects of disability and signposting to other sources of help.

Equipment, aids and home adaptations may make it easier for you to manage at home. There is help to pay for home adaptations.

Personal alarm systems and telecare can allow you to call for help in an emergency, remind you to take medication and more.

REMAP is a group of volunteers that make bespoke aids for disabled people.

At home

Protected Telephone Services and Priority Repairs are available to help support people with long term conditions and disabilities. This helps to make sure that your phone line is working, so you can use it to stay in contact with others and in emergencies.

Ways to get active

Disabled people are twice as likely to be physically inactive than those without a disability . Meaning they miss the wide-ranging benefits that physical activity can bring, such as:

Exercise can lower high blood pressure which could reduce the amount of medication you need to take.
Slowly increasing your time walking improve your ability to perform day to day tasks if you have Chronic obstructive pulmonary disease (COPD),
Being physically active and having a healthy diet increases survival rates for people recovering from cancer.
People who suffer from chronic pain and/or fatigue and exercise have better control over their symptoms

Read more about the benefits of being physically active

Disability Rights UK, Sport England and English Federation of Disability Sport have produced a guide to Being Active which is aimed at people who feel that their long-term condition or disability is preventing them from getting active. Activities that may be suitable are chair-based activities, cycling, walking, jogging, rock climbing, yoga, Pilates and Zumba

You can also find events and activities on InformationNOW, including disability inclusive events and activities

Sports

Percy Hedley Foundation run a Sports Academy in Killingworth which offers a range of wheelchair sports including:

boccia
basketball
powerchair football
martial arts

British Blind Sport may also be able to put you in contact with activities in the North East.

Activity Alliance’s Inclusive Fitness database has a list of inclusive gyms and leisure centres

Newburn Activity Centre run Freestyle activities for disabled people – they have a range of adapted bikes, handcycles in the gym, curling or boccia as well as archery. Their facilities include a sensory and interactive room as well as hoists to help people get changed or get onto the trampoline.

Recyke y’bike can help make accessible changes to your current bike, such as making handlebars or a footplate

Smile through Sport offer boccia to those with a disability, mental health condition, dementia and older people.

British Blind Sport aims to give blind and partially sighted people the opportunity to participate in a range of sports.

Tailored Leisure Co offers a range of support and levels of home-based online fitness.

Taking a short break or a holiday

Taking a break or a holiday is a great way to recharge the batteries. Read our article on short breaks which lists a range of organisations which help people and families with a disability.

Support and Education

An important aspect of self-care is to understand your long-term condition or disability. NHS services offer education sessions to help you understand how to manage and reduce the impact of your symptoms on day to day living. Listed below are a number of charitable organisations that may offer education sessions – these courses or programmes may have been developed by specialist staff, volunteers with the condition or in cooperation with the NHS, including consultants, specialist nurses, occupational therapists, dietitians and psychologists. At the bottom of the article there is a pink box with Useful Organisations that are listed below. Click on the title and you will be able to find the Organisation contact details. Some education is available more informally through attending support groups.

Where to get benefits advice

You can get benefits advice from a local independent service. They can help guide you through the application process and explain how some benefits may impact upon another. Services in Newcastle include:

Citizens Advice Newcastle (CAN).
Newcastle Welfare Rights Service have self help material on their website
Search Newcastle give benefits advice to older people in the West of Newcastle
Disability North give disability related benefit advice, help with appeals and representation at tribunals

Personal Budgets

Your personal budget will be established once you have received an eligibility assessment from the care and support for adults’ team for Newcastle City Council. A support plan should be established which allows you to use your personal budget to access the exercise or activities that will help you to keep both physically and mentally well.

Direct payments

You may also want to consider using a Direct Payment to appoint a PA or pay for care services. The payments aim to give you more independence, flexibility and choice over how these services are arranged and provided.

Other support

Your GP may be able to refer you into the Changing Health app. This App has clinically proven programmes to help people at risk of
developing Type 2 diabetes and people managing their weight. The App helps you to motivate, manage and monitor your health and wellbeing.

Advocacy help to get your voice heard

If you feel that your needs are not being met, or that you are not being listened to an independent advocate can help you get your voice heard.

Parents and carers

Newcastle Carers can offer support, advice and guidance to people who look after someone with a disability.

Read more about looking after someone

Useful Information

Last updated: March 6, 2025

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