End of Life Care
For the Community and Wellbeing Scrutiny Committee to receive an outline of the community based specialist palliative care improvement programme.
Tom Shakespeare (Director – Brent Integrated Care Partnership (ICP)) introduced the item about end of life care in Brent. He advised that officers had undertaken service user engagement with events in the borough and were now at a point where there was good understanding of the issues people faced in relation to end of life care. There was now an opportunity to shape the model of care going forward, and as that started to develop there would be a need to engage again with communities as well as councillors more broadly on what those options would look like. As the model developed, officers would want to build on the work of the Brent Health Matters Programme, ensuring that the people using services were representative of local communities and listening and responding to the needs of patients. He acknowledged the concern in Brent around the closure of the Pembridge Unit which had presented a number of challenges, and advised the Committee that he had been assured that the resource that had always been tied within Pembridge had remained within the system and invested in end of life care in the borough.
Jane Wheeler (Director – Local Care, NHS North West London) spoke about the common themes they heard when engaging residents, including the wish for speed, but also to engage with the voice of people that they did not usually hear from and reach communities who were not accessing services. There was a need to balance those two wants together, getting to an end point quickly, but respecting the need to do that in partnership with hyper local communities as well as communities that spanned North West London (NWL). There was now a weekly model of care meeting with an equal number of professionals and residents in the room, made up largely of relatives and carers of service users. The group was working to understand what ‘good’ would look like for the future, ensuring that everyone was using the same language to describe the same issues. It was difficult to quantify need, which meant the work was slow, but they expected to get a shared view of what was needed over the next couple of months. At all stages, the ICP were working in an open and transparent way in informal forums, at borough level, and across NWL to do that options work in collaboration with communities.
Janet Lewis (Director of Operations, Central London Community Healthcare (CLCH)) added information specifically in relation to the Pembridge Unit. The Committee were advised that the unit remained suspended, as CLCH had not been able to recruit consultant support for the unit. A bedded unit like Pembridge required intense consultant support and there had been several rounds of recruitment with limited success, including working with other providers to see if there was cover availability but that had not been possible. A recent recruitment exercise for a Community Consultant Specialist Palliative Care Lead with similar challenges had led officers to believe that they would not be able to recruit to the Pembridge Unit. However, throughout Covid-19 up to now CLCH had been able to maintain its 24/7 advice and support telephone line and keep the Specialist Palliative Community Care Team up and running, who were seeing an increase in activity. They had also continued to work in the south of Brent, with St Luke’s providing a similar Specialist Community Palliative Care Team for the north of Brent.
Councillor Nerva (Lead Member for Public Health and Adult Social Care, Brent Council) concluded the introduction, advising that in his Cabinet role it would be important to consider how the needs of Brent residents were affected in the process.
The Chair thanked officers for their introduction and invited the Committee to raise comments and questions, with the following issues raised:
The Committee recalled the previous review presented to Committee from NHS colleagues pre-pandemic, regarding end of life care and the closure of the Pembridge Unit, where they had heard emotive discussions from members and residents. They asked for assurance that the learning from that first review would not be lost going forward, and that the residents in Brent and particularly the South of Brent would not be disadvantaged during the ongoing recruitment challenge. Jane Wheeler acknowledged the importance of the previous full borough review and how much time was committed to that. There was a lot of learning that could be taken from the previous review as well as the rest of London around different models of care and delivery. In the paper online there was a ‘you said, we did’ section which included resident feedback and what had been done to action that feedback where possible. The section showed very clearly what officers were told in that review and what had been done about it, and how it was being taken forward in a transparent way. In relation to the impact on the south of Brent, the Committee were advised that the funding resource had been used as flexibly as possible to meet those needs. Care in people’s homes activity had increased, and funding had been transferred to St Luke’s, St John’s, and Trinity for patients who did want hospice care. Transport costs had been supported to enable that to happen.
In continuing to discuss the closure of Pembridge, officers advised that they were unable to give a commitment at this stage that Pembridge would reopen, even if that turned out to be the preferred model of care option, due to the work done to date to find a consultant unsuccessfully. During Autumn 2021, work had been done with Imperial College Healthcare to see if there was a way to have a network of consultants across services with Imperial and other providers, but officers were not able to find a way clinicians would sign the proposal off as a safely resourced way of delivering care. Officers concluded by committing to do everything possible to ensure no residents were disadvantaged.
The Committee discussed engagement, and in particular what plans were in place to involve more Black and ethnic minority communities in future events. Andrew Pike (ICS Communications Programme Lead, NHS NWL) advised that officers tried to spread information as far as possible using Newsletters, websites, social media, volunteers in the community, GPs and Next Door. It was difficult to reach all communities and it was recognised that more needed to be done to reach more people, and officers were committed to doing that outreach and engagement. Officers were having one to one conversations with community leaders about ways to engage and asked the Committee for any feedback they had or suggestions for reaching all communities. Elcy Nwokeji (Senior Delivery Manager – Brent Integration and Delivery, NHS NWL) advised that an engagement event on 15 June 2022 had discussed the issue of reaching every community, and herself and the Deputy Director of CLCH had scheduled a meeting to speak with voluntary and community services the following week to ensure the voice of all residents was being heard. In addition, officers reached out to communities via the Brent Stakeholder Engagement meeting, which met bi-monthly, and was made up of representatives from different network groups such as the carer’s network. In response to what level of engagement had been had with people with disabilities, officers agreed to come back with a written response.
In relation to the timescales for any consultation process and developing model of care options, Jane Wheeler advised that the aim was to have options ready for consultation by January 2023, although that timeline was slipping following requests for delays from other boroughs due to local elections. The timeline was in the stage of being revised to ensure it was done right, and it was likely there would be options to consult on by next Spring.
The Committee highlighted the ICP’s commitment for all residents to receive the same level of care no matter where they lived in the borough, and asked whether there had been any tangible improvements to make it easier for people to access services. Jane Wheeler advised that there were a lot of different service elements within the overall description of Specialist Community Palliative Care and some had seen improvements while others had not. For example, inpatient beds had not seen an improvement in access as Pembridge was suspended, meaning residents from the South of Brent who would have previously gone to Pembridge were travelling longer to access inpatient care. On the other hand, a tangible improvement had been seen in community services, where capacity had been expanded to hold a greater case load and support more people in their own homes. Michelle Scaife (Programme Delivery Manager – Last Phase of Life, NHS North West London) added that St Luke’s Community Specialist Palliative Care Team had been able to extend their Mon-Fri 9-5 service to 7-day nursing cover, in operation for all Brent residents. ‘Co-ordinate my care’ was in the midst of changing to a new system with an electronic care record that linked to GP records much easier, which would be more user friendly for clinicians to use across the system, and would lead to more care planning for people as they approached dying. Over the past 2 years there had been an increase in the number of care plans and this change in system would make things much easier and more time effective.
In terms of tangible impact for the future, the Committee asked how the local action plan for 2021-2026 would bring that about. Jane Wheeler highlighted that seeing things through the lens of inequalities was an important way to think about it in terms of experience, access and outcomes. The aim was to make those issues consistent and improve on them across NWL. Access would be the easiest to measure but experience was more difficult to measure, and work was being done with providers on how to capture the experiences of users at the end of life. Traditional feedback collection methods were not appropriate for a family who had just used the end of life services and were grieving, so it was important to listen to and hear the stories of people about the challenges they had faced and any positive experiences they had. In relation to measuring outcomes, the national specification set out some of the outcomes that NHS NWL should be striving for, with one key outcome being choice of place of death, as currently there were more people dying in hospital than say they want to die in hospital. In relation to Pembridge, patients had not been asking for more beds but for care responses to individual need. There was a very small percentage of patients supported by specialist community services who were in inpatient beds, with the vast majority of those patients accessing specialist support in their own homes via bereavement services and hospice at home. Patients’ experience and outcomes were being looked at in the lens of choice, ensuring engagement was holistic, personalised and culturally competent.
The Chair invited Councillor Long to address the Committee. Councillor Long began by explaining she had been involved in the engagement on this issue since 2018 and attended the previous Committee meeting which focused on this issue. She asked how the ICP would ensure people throughout the whole of Brent received the same level of care, as the care they received was from different service providers depending on where they lived. She also raised the impact of the cost of homecare for carers, highlighting the Marie Curie campaign about poverty in relation to caring for a terminally ill person. She asked what would be done to ensure people doing home care would not get into more poverty.
The Chair thanked Councillor Long for her address and invited colleagues to respond. In response, Jane Wheeler explained that Hospice at Home was provided by St John’s in the South of Brent, so there was cover across North and South. The wider point about ensuring there were not differing levels of service, access and outcomes for different populations across Brent and NWL was important and key to why the review was underway with all providers around the table committed to change. In relation to poverty work, officers highlighted that this was a national challenge with no easy answer.
The Chair thanked those present for their contributions and drew the item to a close. He invited the Committee to make recommendations, with the following RESOLVED:
To recommend the following key areas for improvement:
i) For the Committee to receive a future update on the progress of the end of life model of care.
Several information request had also been made during the course of the discussion, recorded as follows:
i) For the Community and Wellbeing Scrutiny Committee to receive further information about the engagement event on 15 June 2022, included how many people attended.
ii) For the Community and Wellbeing Scrutiny Committee to receive information on how the NHS worked to engage people with disabilities.