End of Life Conversations

Stockport CCG and Stockport NHS FT contacted Healthwatch Stockport to ask them to take part in a review around end of life care plans to facilitate the views of local people who may have had experience of palliative and end of life care.

Healthwatch Stockport devised an End of Life conversation and promoted it via social media, circulating and displaying posters via their contacts and directly contacting local voluntary organisations and community groups to invite people who have experience of end of life care.

A total of 25 people contributed to the conversation. 17 people attended the event, a small number of people were unable to attend the event and so feedback was gathered electronically. They also attended a group of carers for people with learning disabilities.

Overall the conversation was engaging and participants identified issues of concern which mainly included the following:-

• There appears to be an uncoordinated approach to palliative and end of life care by professionals i.e. General Practitioners, District Nurses and employed carers.

• Professionals often do not begin or include the initial end of life care conversation with the patient and/or carer

• Carers and family members often feel that they are not listened to in relation to patient care

• Patients ‘holistic needs’ are not being met as Care Plans are not developed soon enough and are not patient centred

• People need more support during and after their bereavement to help address isolation, financial issues and wellbeing

• There is a real concern for the care of patients who are deaf and have learning disabilities (also in circumstances if their carer dies)

• Social Workers (and those employed as part of the Respite Team) are seen to be providing a good service, when they are knowledgeable and experienced

• The care setting is important as the quality of care provided differs depending on the setting

This report demonstrates clearly that the current model of practice for palliative and end of life care is not fully suitable to meet the needs of patients and carers in Stockport. Whilst there are pockets of really good examples of practice, this is not consistent throughout Stockport.

1. Develop a professional co-ordinator role to have contact with patients and carers and help to co-ordinate appropriate support services

2. Utilise and invest in the skills and expertise of the voluntary and community sector to help with above coordination, respite and support

3. GP’s to be provided with information on support services for palliative and end of life care

4. Improve provision for profoundly deaf people and people with learning difficulties to ensure new model meets their needs

5. Undertake further engagement with people from black and minority groups

6. Mandatory training for care staff and other professionals involved in palliative and end of life care should include information on all support services that is available to those being affected, when and how to start end of life care conversations with patients (carers and family), especially if a patient is suffering from Dementia

7. identify End of Life Care Champions to facilitate conversations in local group to keep the conversation going. Incorporate good practice from local organisations as well as national charities and organisations such as Hospice UK and the collaboration ‘Dying Matters’, The National End of Life Care Programme and The National End of Life Intelligence Network.