Agenda item

In attendance for this item were:

NHS Herefordshire and Worcestershire Clinical Commissioning Group (CCG):

Dr Clare Marley, Medical Director

Julia Neal, Programme Lead for End of Life Care

Worcestershire Health and Care NHS Trust:

Claire Curtis,Clinical Director for Specialist Palliative Care Services

Dr Marley, Medical Director at Herefordshire and Worcestershire CCG summarised the Agenda report and explained that she had worked as a GP in Wyre Forest for over 9 years with particular interest in end of life (EOL) care.

In April 2019 an End of Life Care workstream was set up across the Herefordshire and Worcestershire Sustainable and Transformation Partnership (STP) to ensure a focus on care across the two counties. It was fortunate that Worcestershire already had in place a very good network.

The need for collaborative working had been recognised and a workshop attended by representatives from the health, care and voluntary sector had reviewed good practice and identified areas for improvement including:

• increased and early identification of people who wold benefit from EOL support and care planning
• high quality care for people at EOL, their families and carers in every setting
• accessible, coordinated and digitally-enabled palliative and EOL services for all patient groups
• an appropriately skilled workforce
• high quality bereavement support and information
• an embedded ReSPECT process.

Examples of specific actions taken to address the priorities identified included:

• promoting identification of those living with severe frailty, recognising their vulnerability to acute deterioration in health, and potentially higher risk of hospital admission and death – work took place to utilise GP practices’ registers of patients with severe frailty, which gave an opportunity to proactively identify such patients and offer personalised care planning
• work with Neighbourhood Teams to ensure proactive review of patients at risk of acute deterioration
• a quality improvement workshop for GPs, which allowed practices to review how patients were identified and personalised care planning discussions.

Monitoring patient and carer experiences was fundamental to improving EOL Care, and a number of approaches had been taken – one example was the enhancement of local GP contracts with an EOL component which meant practices could take additional actions such as reviewing every death, expected and unexpected. Other examples included mortality reviews of patients dying within 48 hours of attending an Emergency Department and a workshop to identify learning to support patients out of hours.

The COVID-19 pandemic had necessitated a shift in focus to ensure increased demand could be met. An End of life COVID response group had been set up, which had proved invaluable in the rapid development of guidance to support patients. Hospitals had been given additional funding to increase capacity for bereavement support and St Richards Hospice had played an important role in providing education to care home staff.

Summing up, the Medial Director explained that a refocus on the Personalised End of Life Care Strategy was now taking place, to include some additional priorities to reflect on learning identified, including from experiences during COVID, which had revealed some very positive elements of care, but also some fragmentation, in particular for out of hours care. The additional priorities included:

• a 24 hour/7 day week single point of access to support and advice
• education and training on communication and clinical skills to improve timely recognition of dying, promoting personalised care and advanced planning discussions
• review of access to hospice at home and transitional services for children
• shared access to electronic patient information
• embedded ReSPECT process across all care providers 

Some further detail about the ReSPECT programme was provided. The recommended summary plan for emergency care and treatment created a personal plan for conversations between the person, their families and health professionals about what mattered most to them and was realistic for their care. Increasingly, the process was being adopted across the UK and positively, Worcestershire was an early adopter and the CCG had recently allocated further funding and a further project manager. Having rolled out the project, the focus of work was now to continue the increased number of EOL conversations taking place.

The Chairman invited discussion and the following main points were made:

• The Chairman highlighted the sensitivity involved in initiating the EOL process to a patient, which was acknowledged by the Medical Director, who also advised that in general the clinician would have an established relationship with the patient, and that many patients valued the opportunity to talk about their wishes.
• When asked how the EOL process worked with patients not in the system, for example a sudden accident, the representatives advised that all care providers had the necessary form so that clinicians were equipped to have the necessary conversations. In general, it was important to encourage EOL conversations to take place before the crisis point.
• A HOSC member asked where the single access point was and how it worked and was advised that this was currently at the point of early discussion.
• A HOSC member sought further detail about EOL scenarios and discharge processes for example for someone being diagnosed from hospital, and she also sought further detail about the 90 day EOL survey.  It was agreed that the Personalised End of Life Care Strategy would be circulated, which provided further detail.
• A HOSC member asked whether anything had been done about changes to funding streams if a patient was transferred from a health to a social caresetting, which the Medical Director undertook to check.
• Cllr Agar reported that her own recent experiences of EOL care whilst caring for her husband, had been a long way from what had been outlined. She had not been informed that EOL conversations with her husband had taken place and understood that the conversation had been insensitive. She was unaware of bereavement support. Overall, the lack of overnight support, communication and reassurance meant she could not sleep and did not feel in control of the process.  The Medical Director thanked the member for sharing her experiences of this very distressing time and requested the opportunity to follow this up after the meeting. She acknowledged the need for control and somewhere to go to and would look into wider promotion of a leaflet about bereavement support.
• Dr Curtis, Consultant in Palliative Medicine acknowledged that Cllr Agar’s experiences were very illustrative of the support needed for families who were caring for a family member at home. She explained that EOL experiences had been affected by COVID-19, therefore though overnight care was very important, at the moment hospital overnight care was not provided - care agencies could provide this, but it was an area of ongoing consideration. The importance of working with families was acknowledged and that there was more work to do.
• The Health and Care Trust representative pointed out that the ReSPECT process was essentially an emergency process plan which everyone could initiate at any time.
• A HOSC member asked about planning for hospice capacity and how care homes were being involved in the ReSPECT process, and was advised that a lot of work had taken place, including follow-up with care homes where residents had been inappropriately taken to hospital; during COVID-19 - significant progress had been made in this area.
• The Chairman asked whether the progress made through working with care homes had relieved some of the pressure of inappropriate ambulance call-outs and was advised that overall, systems were working and interacting differently, and that staff feedback had been positive about how learning had developed.
• In response to a query from the Chairman, the CCG representative advised that as far as they were aware, every GP practice had signed up to the enhanced contract element, with very positive engagement.
• A HOSC member sought assurance that EOL patients would be placed in appropriate hospital wards, which had not been the experience of his own relative, and the Medical Director agreed that transitions were a very important stage and she would escalate these comments.
• Cllr Taylor expressed concern about an incident where the response he had received about a relative’s care had been far swifter once he had declared he was a councillor, than enquiries he had made solely as a relative.
• A HOSC member asked where ReSPECT forms should be kept and whether they were hard copies or also available electronically, and was advised that it was important they were kept at home so that they were available for ambulance staff, however forms were also kept on GP records and GPs were encouraged to share electronic records with ambulance and out of hours services. The representatives advised that ensuring all organisations had access to ReSPECT forms through electronic records still represented a challenge, and the Committee asked to be kept updated about progress.
• Regarding a single point of contact, a member asked whether the 24/7 lifeline system in Redditch been considered, which was noted by the representative’s present.
• The Chairman queried the simplicity of the ReSPECT form, and was advised that it was important to strike a balance between setting out an individual’s wishes whilst being very clear to ambulance crews and to family members, and also to capture that the EOL conversations around the form, which were important, had taken place. For someone completing a form, it was important that this was part of more detailed conversations with a health professional
• The Programme Lead explained the need to reflect the changing needs of patients with long term health conditions was being incorporated into the process.

The Chairman thanked everyone for their input. The Vice-Chairman suggested it would be helpful to have an update in six months’ time on further work to advance the progress so far and it was hoped that this would also reflect the Committee’s comments.

The representatives present undertook to provide the following information:

• further detail of the Personalised End of Life Care Strategy
• information on costs when a patient transferred between health care and social care services
• Contact details so that members can feedback learning points from members of the public
• CCG to follow up points raised by Cllrs Agar and Taylor
• Update on EOL Care in six months’ time.