Dying well – views and experiences of residents in Blackburn with Darwen

Healthwatch Blackburn with Darwen undertook research on dying well to feed into the local council’s Dying Well Strategy.  They carried out six focus groups across the borough in Summer and Autumn 2023 with residents from a range of ages and ethnic backgrounds.  They spoke to 43 residents.

There was a lack of awareness amongst people about advanced care plans to help ensure that people have choice and control over what happens to them and improve the quality of end of life care they receive. These should be made available on websites of health and social care professionals and voluntary sector support agencies. Residents also felt that professionals should respect individuals’ decisions to change these plans and be flexible in the support they provide at end of life. East Lancashire Hospice delivers education sessions for employees of the local authority, primary and secondary care, care agencies, education settings and voluntary sector on advanced care planning. Increased awareness and uptake of this training would help increase the number of organisations across the borough who can support individuals to do this.

A key message from residents was for professionals to respect individuals’ wishes. This was very important for Muslim residents– hospital staff should limit touching the body and respect families’ refusal of a post mortem.

Greater support for individuals and families to plan financially for end of life would be beneficial including joint promotion between the voluntary sector and local law firms of free wills month.

The need for better awareness and wider provision of bereavement support in the borough was a key theme from the focus groups. It was clear that people felt that this provision should be person-centred because people’s experiences of grief at the loss of a loved one can be very different. A need for ‘anticipatory’ bereavement support was also highlighted.

Healthwatch spoke with the Head of Community Supportive Care at East Lancashire Hospice. The Hospice are carrying out engagement in communities to increase awareness of their services currently, including their bereavement support. This is available to anyone over the age of 16 who is grieving, irrespective of time, cause or relationship, and is registered with a GP in Blackburn, Darwen, Hyndburn or the Ribble Valley. There is no requirement to have had previous contact with hospice services. Increased promotion of this support across both the statutory and voluntary sector would help increase awareness of bereavement support in the borough amongst residents. However, there is a waiting list for this support, therefore additional funding to extend this provision, for which there is a clear need, would be important to extend their offer.

Although the Hospice only provides support to residents aged 16 and over, Healthwatch recommends that they visit youth groups across the borough so that young people are aware of what support is available for their family and carers. An alternative youth offer would be beneficial for young people and should be explored by Public Health. Promotion of Cruse website by the Wellbeing Service, health and social care professionals as well as the voluntary sector would also help meet the gap in need for bereavement support.

Tailored additional support for carers after a bereavement was felt to be important and Healthwatch recommends that the local Carers Service ‘Life After Caring’ course is promoted widely to residents and potential joint working between Carers Service and the Hospice be explored.

Healthwatch recommends that education on bereavement is included within PSHE lessons both in primary and secondary schools to help young people talk about it freely, something they are not always able to do with family and carers. Support should be available from any trusted professional they feel most comfortable to talk with. Wellbeing Champions in schools could also offer peer to peer support.

Young people recommended that a website like Kooth would be beneficial to support them through a bereavement and give them to talk anonymously with young people who have experienced the same loss or to a counsellor.

Young people also wanted suicide awareness training in schools to help raise awareness and help them deal with the loss of a loved one through suicide. Healthwatch recommends that Papyrus provide training for young people across all secondary schools in the borough. They would also recommend that schools take a whole school approach to supporting their students when the school experiences loss of a student to suicide.

Individuals and families felt that it would be best if the GP could initiate a conversation about end of life with both the individual and family/carers and then involved wider health and social care professionals in the support required in the last twelve months of life. The wider involvement of professionals should also include organisations such as the Hospice and voluntary sector organisations such as BwD Carers Service.

Equally the role of the faith sector in offering holistic support for individuals and families and carers should be taken into close consideration in this preparation for end of life. Training for health professionals both in primary and secondary care to have these difficult conversations would help improve the quality of preparation for end of life and help everyone plan palliative care in a way that is person centred and not rushed.