‘How people die remains in the memory of those who live on’
Dame Cicely Saunders
Getting the most from professionals
Getting the most from professionals
When you are caring for someone you may be able to get help from your local social services and NHS. This is not only for when someone is dying but also when someone has a life limiting condition such as dementia, heart failure, cancer and motor neurone disease. There are links to many of these web sites on the general advice for carers page.
Your GP will be able to provide a referral, or you may contact them directly for advice. Before you see them try and be prepared with the questions you need to ask. Do not be afraid to write them down and produce a list, and write down the answers too if this helps. With so much to think about it is easy to forget something!
Social Services
Your local Social Services are able to provide a range of services to support you. Day-to-day support services could allow you to go to work or take a break during the day. They could also help you when the person you care for needs specialist care or a substantial amount of looking after.
Although you access their services through your local authority, social services may work with other agencies to provide different types of support - for example, charities and private sector organisations.
To contact your local Social services you can ask your GP to make a referral or find their details form the telephone directory, internet, library or CAB.
For further information about support from Social Services go to: www.direct.gov.uk/en/CaringforSomeone/CaringandSupportServices/DG_4000178
The NHS
If the person you are caring for needs medical, nursing or other health care this is funded by your local Primary Care Trust. Your GP will be able to refer you to the correct professional who will assess your needs. If you need more information about local NHS services contact your local Primary Care Trust. You will find their details in the telephone directory, the GP surgery or the internet.
For more information about support from the NHS go to: www.nhs.uk/CarersDirect/
Specialist Palliative Care Teams
Specialist palliative care teams will be able to provide support to you as a carer. They will help with the management of pain and other symptoms and the provision of psychological, social and spiritual support. The goal of palliative care is achievement of the best quality of life for patients and their families and many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments. Ask your GP, Hospital or local hospice for more information.
The End of Life Care: Gold standard Framework
The Gold Standards Framework (GSF) is a way of working that has been adopted by many GP practices and District Nursing teams across the UK. It aims to help them to provide the highest standard of care possible for all patients, and their carers, in the last years of life. For more information go to:
http://www.goldstandardsframework.nhs.uk/GSFInPrimary+Care/QualityandOutcomesFramework/Carers.htm
The NHS employs over a million staff in thousands of locations. It is a large and complex organisation providing a broad range of services. It is not surprising that sometimes you or a loved one may feel bewildered or concerned when using the NHS. And this can be at times when you are feeling at your most vulnerable and anxious.
Patient Advice and Liaison Service (PALS)
The Patient Advice and Liaison Service, known as PALS, has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible.
PALS also help the NHS to improve services by listening to what matters to patients and their loved ones and making changes, when appropriate. For example PALS will:
- Provide you with information about the NHS and help you with any other health-related enquiry
- Help resolve concerns or problems when you are using the NHS
- Provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint
- Provide you with information and help introduce you to agencies and support groups outside the NHS
- Inform you about how you can get more involved in your own healthcare and the NHS locally
- Improve the NHS by listening to your concerns, suggestions and experiences and ensuring that people who design and manage services are aware of the issues you raise
- Provide an early warning system for NHS Trusts and monitoring bodies by identifying problems or gaps in services and reporting them.
If you would like more information about PALS, the functions it is intended to provide and the standards it should strive to achieve, follow this link: http://www.pals.nhs.uk/
Local Involvement Networks (LINks)
LINks have been being set up across the country to help you influence the way your health and social care services are run. They are made up of individuals and community groups who work together to improve local services. Their job is to find out what the public like and dislike about local health and social care. They will then work with the people who plan and run these services to improve them. This may involve talking directly to health care professionals about a service that is not being offered or suggesting ways that an existing service could be made better. LINks also have powers to make sure changes happen.
A LINk will:
- ask local people what they think about local health and social care and suggest improvements directly to the service providers to look into specific issues (like a dirty hospital)
- make recommendations and get a response, ask for information and get answers in a specified amount of time
- be able to carry out spot checks to see if services are working well
- refer issues to the local ‘Overview and Scrutiny Committee’ if it seems action is not being taken
For more information go to: http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/PractitionersAndServices/DG_071867
One area that causes the most concern is financial matters. Whether this is dealing with someone’s finances when they die, financial support for you whilst caring for someone who is dying, or paying for a funeral, there is lots of advice available.
Many of the web sites already mentioned have advice on financial matters. Any of the following will be able to advise you:
