Living with a Long Term Condition

Personal Care Plan
If you live with a long-term condition then you can have a personal care plan.

This is an agreement between you and your health professional (and/or social services) to help you manage your health day-to-day. It can be a written document or something recorded in your notes.

You can be involved in putting together your care plan. You can say how you want to manage your health choose what’s best for you. It’s based on what you want, so you’re in control.

If you think a care plan could help talk to your GP, nurse or social worker about the support you need to manage your condition better. Mention things that are important to you and any goals you want to work towards. These can range from losing weight or stopping smoking, to going out more or getting back to work.

Also, try to talk about anything that might be worrying you. For example if you sometimes feel lonely or anxious.
The care plan is there to help you. It will cover areas including:

  • Goals you want to work towards, such as getting out of the house more, returning to work, or starting a hobby
  • Support services you want such as: who will provide; what have you agreed to and when
  • Emergency numbers such as: if you become unwell when your doctor’s surgery is closed
  • Medicines
  • Eating plan
  • Exercise plan

Make sure you say what’s important to you and that you’re happy with any decisions included in the plan. Unless health and social care workers know what you want, they can’t put it in.

Usually your care plan will be printed on paper for you to take home. If you’re not given a paper copy, ask for one. Your care plan may also be stored in your GP practice’s computer system.

All the information in the care plan is private, seen only by you and the people who give you care or support. If you want to give permission for someone else to see the care plan, you can say so.

You can have a care plan review at least once a year. You can also ask for one if you feel the plan isn't working or other things in your life change.

ReSPECT
If you have a long term condition, complex health needs or just want to be prepared, you might want to think about ReSPECT:

ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. It provides health and care professionals, responding to that emergency, with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. ReSPECT can be complementary to a wider process of advance/anticipatory care planning.  More information can be found on the ReSPECT Process website www.respectprocess.org.uk

‘Help Us to Help You – look after your own health’
The NHS faces a number of big challenges with a growing population and increasing costs. The ‘Help Us to Help You’ brochure aims to raise awareness of how we can help you to help yourself by supporting you to take greater control of your health and wellbeing.

Winter Care Advice for People with COPD
This leaflet gives you tips to help you to keep well over the winter period. If you need further advice and support, please contact your GP, practice nurse, respiratory nurse or community matron.

Living with diabetes
Over 3.3 million people in the UK now have diabetes. It's an increasingly common disease and although living with diabetes can be difficult, there are lots of ways to manage your condition effectively.

The charity Diabetes UK offers some great advice and guidance on managing diabetes.

The DAFNE website also offers help to manage type 1 diabetes.

There are supportive learning sessions offered to people with diabetes in Hull and East Riding. Read the leaflet for more information.

Stroke
For more information and guidance on living with a stroke please click here

Making Every Contact Count
Making Every Contact Count (MECC) is an evidence-based approach to improving people’s health and wellbeing by helping them change their behaviour. The approach enables health and care workers to engage people in conversations about improving their health by addressing risk factors such as alcohol, diet, physical activity, smoking and mental wellbeing. https://stpsupport.nice.org.uk/mecc/index.html
https://www.mecclink.co.uk/

Living independently with long term conditions
The Ipsos Mori Ethnography Centre of Excellence has published an evaluation exploring the lives of older people living with multiple long term conditions.

Navigating health and care: living independently with long term conditions sets out the views of 36 patients, family members and carers in order to gain an insight into their experiences of living with and managing their long term conditions and the care they receive. 

The evaluation finds older people living with multiple long term conditions are generally happy with the NHS but often find the health and care system is not set up for their needs. To view the presentation in full please click here.

Self-management guidance
The Health Foundation Trust has published A practical guide to self-management support: key components for successful implementation. This guide explains what self-management support is and why it is important. It looks at various aspects of putting self-management into practice, including planning and commissioning, building knowledge, skills and confidence, and measurement and evaluation. The guide also contains suggestions for further reading and case studies of self-management support in practice.

If you have a long-term condition there are extra things you may need to consider such as making changes to your diet, different types of exercise or medication you may need to take.  You can also speak to your doctor or nursing team about the development of a care plan to support you.

Key Links

Diabetes UK - www.diabetes.org.uk

Athritis Care - www.athritiscare.org.uk/inyourarea

Asthma Uk - www.asthma.org.uk

British Heart Foundation - www.bhf.org.uk

British Lung Foundation - www.lunguk.org

Stroke Association - www.stroke.org.uk

Age Concern - www.ageconcern.org.uk

Help the Aged - www.helptheaged.org.uk

National Council for Voluntary Organisations - www.ncvo-vol.org.uk