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 as you get older:
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.
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.
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.
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.
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 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.
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.
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.
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.
Percy Hedley Foundation run a Sports Academy in Killingworth which offers a range of wheelchair sports including:
- Powerchair Football
- Martial arts
Active Newcastle may also be able to help you access appropriate activities.
Your personal budget will be established once you have received an eligibility assessment from the Adult Social Care team for Newcastle City Council. A support plan should be established which allows you to use your personal health budget to access the exercise or activities that will help you to keep both physically and mentally well.
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. On the right hand side of the screen there is a pink box containing 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
- Arthritis Care
- Asthma UK
- Blood Pressure UK
- Bowel Cancer UK
- British Lung Foundation
- British Nutrition Foundation
- Diabetes UK
- Dementia Care
- Hearing Voices Network
- MS Society
- National Autistic Society
- National Rheumatoid Arthritis Society
- Parkinson’s UK
- Prostate Cancer UK
- Stroke Association
- Thyroid UK
Other useful information
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.
British Blind Sport may also be able to put you in contact with activities in the North East.
If you are lucky enough to live in or visit the Lake District you could ask Freedom Wizard to take you around the Lakes in an all terrain wheelchair (min donation £50).
If you feel that your needs are not being met, or that you are not be listened to, you may need an advocate to help you get your voice heard.
Last updated: June 20, 2018