Connected Palliative Care

End of life care is support for people who are in the last months or years of their life. The care you receive should help you to live as well as possible until you die and to die with dignity.
Those providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.
They should also support your family, carers or other people who are important to you.

You have the right to express your wishes about where you would like to receive care and where you want to die.
You can receive end of life care at home, in a care home, hospice or in hospital, depending on your needs and preference. People who are approaching the end of their life are entitled to high-quality care, wherever they’re being cared for.

Different health and social care professionals may be involved in your end-of-life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.

If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home and family and friends may be closely involved in caring for you too. End of life care is a form of palliative care you receive when you’re close to the end of life.

Palliative care is available when you first learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition.

If you have an illness that cannot be cured, palliative care makes you as comfortable as possible by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.

Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses. Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses, or specialist occupational therapists or physiotherapists.

Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.

End of life care should begin when you need it and may last a few days or months, or sometimes more than a year. People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.

You must be an adult and be registered with a GP within Sandwell and West Birmingham Clinical Commissioning Group. You must be referred to us by a health professional. Once known to our service, you and your relative or carer can contact us directly.

• Advice and support to help you cope with your illness.
• Offer practical suggestions to help you do the things that are important to you.
• Signposting you to services that provide care, advice and equipment.
• Support for your relatives and carers.
• Consider referral for specialist assessment by a local specialist palliative care team if your symptoms or needs are difficult to manage .

Specialist Palliative Care Team referral is for people who are in hospital or living in the community with a diagnosis of advanced life limiting illness and have:

• symptom control or other complex problems, which are increasing or are unable to be managed by the current clinical team.
• complex social needs resulting from their illness or if their family are very distressed.

This team is made up of clinical nurse specialists, consultants in palliative medicine and allied healthcare professionals and they support people and their families.  

They work closely with other people involved with your care including GPs, district nurses and hospital consultants and nurses. They can also refer you to day services or to be admitted to one of the local hospice inpatient units if appropriate. 

They can talk with you about any physical, emotional, spiritual or social issues which may be having an impact on your life. They have a good knowledge of what can help, including medication to improve symptoms such as pain, sickness or breathlessness. They have time to discuss thoughts and feelings which you may wish to share and can give information to help people make choices.

For Sandwell residents we also offer our ‘Palliative Living Well Service’ for help for symptoms along with practical support and advice with managing specific symptoms such as fatigue, anxiety and breathlessness. This includes group sessions at Rowley Regis Hospital if you can access your own transport. Alternatively, we can visit you in your own home if you are unable to come to group sessions. 

For people at home your specialist palliative care will be from which ever local provider your GP has chosen. Connected Palliative Care can help make sure you are referred to the correct one. 

We will ask you some questions in order to advise you best. With your permission, the team will access your health record on the computer, so they are able to see your recent history. They will enter the details of your call into your health record so your usual health care team will be up to date. If necessary, the team will transfer your call to a nurse to provide you with extra advice and support and put you in touch with other services if needed. This may include involving a district nurse, a specialist nurse, a doctor or another health professional.

Overnight a nurse from Connected Palliative Care will take urgent telephone calls and assist you with your call appropriately.

Below is a list of useful websites.

Dementia progress – what to expect, eating and drinking towards the end of life: Information for family and friends 

How to use breathing exercises and activity to manage your COPD: Breathe well, Move More, Live better.

The following link has information about changes in the last days and hours of life: www.nhs.uk/conditions/end-of-life-care/your-wellbeing/changes-in-the-last-hours-and-days

For more information on tissue donation go to the National Referral centre or telephone 0300 123 23 23.

A list of patient information leaflets can be found here about organ donation: www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-england

Information for people living with final stages of chronic lung disease and chronic liver disease can be found below by clicking the relevant links:

1. Final stages of chronic lung disease
2. Final stages of chronic liver disease

If you are caring for someone who is very ill or dying at home there are things you can do to help them feel comfortable, from helping with their pain to moving them in bed. Please click the links below to find out more.

1. Useful advice and guidance about caring
2. Understanding resuscitation

Edwards Trust
Supports children and families through serious illness and bereavement.
Telephone: 0121 454 1705
Web: www.edwardstrust.org.uk

Hospices

Birmingham Hospice
Located at the following addresses:
76 Grange Road
Erdington
Birmingham
B24 0DF

176 Raddlebarn Road
Selly Park
Birmingham
B29 7DA
Email:  hobs.referrals@nhs.net
Phone: 0121 752 2274
www.birminghamhospice.org.uk/

Mary Stevens House
221 Hagley Road
Oldswinford
Stourbridge
DY8 2JR
Tel: 01384 443 010
www.marystevenshouse.co.uk

Compton Hospice
74 Compton Road West
Wolverhampton
WV3 9DH
Tel: 0845 225 5497
www.compton-hospice.org.uk

St Giles Hospice Walsall
Goscote Lane,
Walsall
WS3 1SJ
Tel: 01922 602520
www.stgileshospice.com/Walsall