Report of the Manchester Deputy Place Lead and Marie Curie Lead

This report provides critical research from the Better End of Life programme,  conducted in collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, the University of Hull and the University of Cambridge, in relation to experiences of palliative and end of life care, as well as identifying policies and resources that will help to make a positive difference to the lives of people affected by dying, death and bereavement. Marie Curie have asked all localities to respond to an audit questionnaire and the findings from this are discussed in the body of this report and will inform locality developments.

In order to give a rounded perspective of issues and challenges across Manchester as well as the GM Integrated Care Board, contributions have also been collected from the GM Quality Improvement Programme Manager, Palliative & End of Life Care, who describes the developments and ambitions of the GM Palliative and End of Life Care Programme, and the Manchester Locality Team, (Primary Care as well as Quality), where the issues and challenges in relation to transformation are discussed. 

The Committee considered the report of the Manchester Deputy Place Lead and Marie Curie Lead that provided critical research from the Better End of Life programme,  conducted in collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, the University of Hull and the University of Cambridge, in relation to experiences of palliative and end of life care, as well as identifying policies and resources that woulld help to make a positive difference to the lives of people affected by dying, death and bereavement.

Marie Curie had asked all localities to respond to an audit questionnaire and the findings from this were discussed in the body of this report and would inform locality developments.

In order to give a rounded perspective of issues and challenges across Manchester as well as the GM Integrated Care Board (ICB), contributions had also been collected from the GM Quality Improvement Programme Manager, Palliative & End of Life Care, who described the developments and ambitions of the GM Palliative and End of Life Care Programme, and the Manchester Locality Team, (Primary Care as well as Quality), where the issues and challenges in relation to transformation were discussed. 

Key points and themes in the report included:

·         Providing an introduction and background;

·         Discussion of Marie Curie’s ‘Better End of Life’ programme; that included consideration of poverty, inequality and inequity; support for Carers; and bereavement support;

·         Information regarding the UK Commission on Bereavement;

·         Greater Manchester developments with reference to the Greater Manchester Palliative and End of Life Care Programme that had been established in 2013;

·         Manchester developments, with reference to the Manchester Palliative and End of Life Care Partnership;

·         Summary and next steps.

Some of the key points that arose from the Committee’s discussions were:

·         Thanking the Chair of the Committee for bringing this important report to the Committee and having an opportunity to hear from partners;

·         Recognising the importance of this subject area in the context of Manchester becoming an ACE-aware and Trauma Informed City;

·         Discussing the cultural attitudes to death and dying and asking if there were examples of good practice that could be learnt from;

·         Noting the significant issue of poverty and the impact this had on individuals and their families;

·         Recognising the importance of carers and families;

·         Noting that across the UK, over 40% of adults who wanted formal bereavement support didn’t receive any and asking that any future update report include a breakdown of this figure by protected characteristic if available;

·         Did the Council as an employer provide any bereavement support for staff:

·         A network of Champions should be established to promote and support this work, including Council Directorate Champions with a single point of contact for residents to expedite any request for support;

·         Information was sought in relation to Compassionate Communities;

·         How was the voice and experience on citizens captured to inform this work;

·         Supporting the identified priority to improve earlier identification in Primary Care; and

·         What were the next steps.

The Local Public Affairs Officer, North West, Marie Curie made reference to the levels of unmet need, stating that this equated to 830 people in Manchester who were not receiving palliative care. He further discussed the issue of the number and proportion of working age people and pensioners dying in poverty, commenting that this was a significant issue for Manchester and would only be compounded by the continued cost of living crisis. He commented that the Council played an important role in addressing this by offering financial support to residents and delivering efficient social care. He stated that the Council had an important role in holding the ICB to account in their planning and delivery of palliative care. He concluded by informing the Committee that the Health and Care Act 2022 had placed a statutory responsibility on the local ICB to provide palliative care. He commented that he would support the introduction of bereavement support being provided for Council staff and that this should also be offered in schools.

The Chair, NHS Greater Manchester Integrated Care commented that the ICB was taking their responsibility in relation to palliative care very seriously. He advised that a report had been submitted to the Board’s September 2023 meeting on this topic, commenting that an all age approach to end of life care would be taken. He said that a mapping exercise of provision across Greater Manchester would be undertaken with the intention being to address disparity and variation. He further commented that it was recognised that most people died in hospital however their preference would be to die at home with their families and loved ones and that an objective would be to better support this. The Chief Operating Officer, MLCO added that this was being discussed with the Manchester University NHS Foundation Trust.

The Chair, NHS Greater Manchester Integrated Care acknowledged the important work of the VCSE and charities; however, he commented that many of these organisations were under incredible financial strain.

The Associate Medical Director, NHS GM (Manchester Locality Team) informed the Committee that for care home residents a personalised care plan was established and this included conversations to understand the wishes of the individual in regard to their preferred place of death with a focus on quality and dignity of end of life care.

The Quality Improvement Programme Manager, Palliative & End of Life

Care, NHS GM thanked Marie Curie for their support and work on this important topic. She stated that she was proud that an all age approach to end of life care would be taken and that there was genuine support and enthusiasm to progress this work. She commented that a whole system approach that included Health, Social Care and VCSE partners was required. In response to the discussion regarding bereavement services she commented that this was a national issue and not unique to Manchester. She added that bereavement services offered to children was predominantly provided by the VCSE and these services were under significant pressures, and it was understood that failure to adequately meet this need could result in a child experiencing further complex mental health issues.  With regard to Compassionate Communities, she advised that this was a social movement where local people supported others who were affected by dying, death and bereavement. She said these needed to be developed and grow from communities and recognised that a ‘one model fits all’ approach was not appropriate and that the voice and experience of citizens should inform this work. The Associate Director, Marie Curie reiterated the importance of the residents’ voice and experience to inform this work.

The Quality Improvement Programme Manager, Palliative & End of Life

Care, NHS GM supported the call for the establishment of an ICB Champion for this agenda. She further acknowledged that improvements needed to be made in relation to unmet need.

The Executive Member for Healthy Manchester and Adult Social Care reiterated that the issue of end of life care was a very serious issue and welcomed the opportunity to have this important discussion with the Committee. He commented that this work would also link into the Health and Wellbeing Board and the Manchester Partnership Board.

The Deputy Place Based Lead for Health and Social Care Integration, NHS Greater Manchester Integrated Care stated that the existence of an established partnership approach in Manchester provided a foundation on which to progress this work, using all available resources. He commented that an Action Plan would be developed, with appropriate consideration given to how this work linked with the Making Manchester Fairer Work with relevant input from sounding and engagement boards. He suggested that an update report be submitted to the Committee in the new municipal year at an appropriate time.

The Associate Director, Marie Curie stated that research into cultural attitudes to death showed that the Netherlands dealt well with death and end of life care. She stated that information regarding this would be shared with the Committee following the meeting, adding that this also included how school programmes and education were engaged in this subject. The Chair commented that all opportunities for learning from this model should be adopted where possible.

The Director of Public Health stated that the Council did have a Staff Health and Wellbeing Plan that included mental health. He commented that there was nothing specifically related to bereavement, and following the comments from the Committee he would take that away from the meeting for further consideration.

The Deputy Executive Member for Healthy Manchester and Adult Social Care responded to the comments from the Chair in regard to establishing a Lead Member for Palliative Care by stating that she would be willing to progress this and would follow this up with the Chair following the meeting.

The Chair in concluding this item of business thanked all representatives for attending the meeting and contributing to the discussion. She stated that this had been an important discussion and was the first time the Health Scrutiny Committee had considered this subject area. She stated that an update report would be scheduled for consideration in the new municipal year.

Decision

To note the report.