Self care and disability
Self-care and self-management for people with a disability are terms that are used regularly in today’s society, particularly by the NHS and associated health and social care organisations. Self-care 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 several articles that will help you think about looking after your health.
- 10 Tips for good health
- healthy eating and drinking
- benefits of being physically active
- sexual health
Living with a long-term condition or disability
There is a lot of evidence (based on published research) that shows that it is possible to eat and drink appropriately and undertake physical activity with a long-term condition/illness or disability. More importantly, the evidence shows that the majority of people do benefit from the right form of exercise. So, if you have high blood pressure, exercise can bring it down and perhaps reduce the amount of medication you take. If you have CoPD, then by gradually increasing your time walking, perhaps up to 30 mins a day, you will improve your ability to perform day to day tasks. Physical activity alongside improved eating habits has also been shown to increase survival rates in patients recovering from cancer. People who suffer from chronic pain and/or fatigue have also been found to have better control over their symptoms after undertaking exercise.
NICE has issued guidelines for a number of long-term conditions and disabilities which recommend a range of balance, coordination and exercise routines to help people. You may need to search for terms such as “the management of ” under the term clinical guidelines.
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 are diagnosed with 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 and offer a more “holistic” service. 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 or a seat for the bath. They will be able to teach you some exercises to practice between sessions to help with recovery.
Tyneside Musculoskeletal service offers offers self-care and fast 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
Problems with breathing, circulation or movement and co-ordination, as well as memory or vision can make it hard to carry out everyday activities. An occupational therapist will work with you to find ways of carrying out vital everyday tasks. This could be dressing, washing, making a hot drink or shopping. The aim is to support an individual to become as independent as possible. They can also help individuals find or continue with fitness and hobbies and 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
Your Equipment Newcastle provides advice on daily living equipment – products that make daily living easier. You will be guided through a step-by-step self-assessment to find and buy equipment.
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.
Sport and fitness
In 2016-17 Sport England conducted an Active Lives survey which showed that between 21% and 51% of people with a condition or disability were less likely to undertake physical activity owing to their condition or disability. There were a number of reasons for this including: lack of information about ways in which to be active, limited conversations with health and social care professionals about being active and anxiety amongst sports sector services about how to engage people with a disability effectively and safely in sports and fitness.
Ways to get 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, all of which are included in the Information NOW fitness article. You can also find events and activities here.
Newburn Activity Centre run Freestyle activities for disabled people – they have a range of adapted bikes, handcycles in the gym, kurling 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.
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.
Cycling
Newburn Activity Centre runs drop-in sessions where you can use a range of adapted bikes or tricycles. You can also arrange group activities on the bikes.
Newcastle Chain gang offer cycling activities for visually impaired people. Visit their Facebook page.
If you require changes to your current bike, perhaps the handlebars or a footplate, then get in touch with Recyke y’bike.
Wheelchair sports
Percy Hedley Foundation run a Sports Academy in Killingworth which offers a range of wheelchair sports including:
- boccia
- basketball
- powerchair football
- martial arts
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.
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.
Support and Education
An important aspect of self-care is to understand your long-term condition or disability. NHS services do 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.
- Action on Pain
- Alzheimer’s Society
- VersusArthritis
- Asthma and Lung UK
- Blood Pressure UK
- Bowel Cancer UK
- British Nutrition Foundation
- Diabetes UK
- Dementia UK
- Hearing Voices Network
- Huntington’s Disease Association
- MND Association
- MS Society
- National Autistic Society
- National Rheumatoid Arthritis Society
- Parkinson’s UK
- Prostate Cancer UK
- Spinal Injuries Association
- Stroke Association
- Thyroid UK
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.
Hate crime and abuse
It’s a criminal offence to target someone because of a personal characteristic, such as autism or a learning disability. This can include name calling, threatening behaviour online or in person, or someone hurting you. Support is available to help you report any hate crime. Read more about what is Hate Crime and how to report it on InformationNOW.
There are different types of abuse and signs to be aware of. Types of abuse include: financial, physical, emotional, sexual and neglect.
Contact Adult Social Care at Newcastle City Council if you are worried that you or someone you know is being abused or neglected in Newcastle. Read more about adult abuse and domestic abuse on InformationNOW.
National Support services
The BBC Television programme, How to stay young, used the Changing Health app to motivate, manage and monitor the health and wellbeing of their participants. Use of the app requires a GP referral.
WheelchairSteve World is a website where WheelchairSteve aims to post regularly about relevant events, activities, products, services, etc that are relevant to life as a wheelchair user.
British Blind Sport may also be able to put you in contact with activities in the North East.
Disability Rights UK are supporting Get Yourself Active , a programme that will be covering the North East.
If you feel that your needs are not being met, or that you are not being listened to, you may need an advocate to 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 disablity.
Newcastle Welfare Rights Service provide information and advice on benefits that you may be entitled to.
Citizens Advice Newcastle offer a support service which includes reviewing correspondence. Attend one of their drop in sessions for advice.
Relevant reading on InformationNOW
You may find these articles on InformationNOW useful
- Accessible Toilets
- Blue Badge Scheme
- Bereavement and grief
- Disability Living Allowance
- Personal Independence Payment
- Disability rights
- Looking after someone
- Making decisions (Mental Capacity)
- Power of Attorney
Last updated: October 16, 2024