CCG Review and Proposals for Local Palliative Care Services
- Meeting of Additional Meeting, Community and Wellbeing Scrutiny Committee, Tuesday 3 March 2020 6.00 pm (Item 4.)
To receive and consider a report from Brent Clinical Commissioning Group (CCG)
providing an update on the review and proposals for local palliative care services in Brent and three other north-west London boroughs.
Hugh Caslake (Head of QIPP and Performance, Brent Clinical Commissioning Group) introduced the report from Brent Clinical Commissioning Group (CCG), providing an update on the review and proposals for local palliative care services in Brent and three other North-West London boroughs. He explained that the Hansford review, an independent review into palliative care services by Penny Hansford, had been prompted by the suspension of the Pembridge Palliative Care In-patient unit, as a result of the resignation of the specialist consultant. The decision for the suspension was on the grounds of clinical safety. Since its suspension, the CCG had been unable to recruit a suitably qualified consultant and the recruitment process was on hold while the full palliative care review was ongoing. The Committee heard that Brent CCG was not included in the commissioning of the independent Hansford review as Brent CCG had already completed an End of Life Care Review in March 2017 with a strategy developed from it. However, interviews had been conducted by Penny Hansford with Brent commissioners, providers, and wider groups and a workshop was held for Brent patients / stakeholders.
Regarding the current services for palliative care, the Committee were told that in-patient bed days for Brent patients in 2019/20 was a total of 2,410, and the percentage of Hospice at Home visits for Brent patients conducted by St John’s Hospice in 2019/20 had increased by 214%, Day Care attendances in Brent had increased by 17%, and home visits by the Community Specialist Palliative Care Service for Brent patients had increased by 10%. The latest NHS England data did not include hospices as a reason for delayed transfers of care therefore data was not collected by any of the local hospices.
Hugh Caslake informed the Committee that of the four potential scenarios outlined in section 2.4 of the report, 3 were derived from the feedback of the workshops and specification from the clinical reference group, and 1 was derived from the Patient and Public Working Group feedback. He outlined each of the potential scenarios, acknowledging the nurse-led impatient unit scenario had came from engagement. The engagement work was intended to look at the entire pathway to palliative care including access and after care. Key points from the workshop findings included; care worked well once services had been accessed but information was inaccessible to navigate prior to that; care planning transparency needed improvement; further awareness of minority communities was needed; concerns around travel times were highlighted and; bereavement services needed to be planned earlier. The future of the Pembridge Palliative In-patient unit was a significant feature in resident concerns. A further series of engagement workshops would be held and finish 13 March 2020, with reports presented to CCG governing bodies and Overview and Scrutiny Committees. Should any substantial change to existing services arise from the engagement process a full public consultation would be conducted.
Regarding inequality of access with only 48% of people who had an expected death having contact with community palliative care services, Hugh Caslake expressed that he believed that figure would be reflected in Brent even though the calculations did not include Brent.
The Chair thanked Hugh Caslake (Head of QIPP and Performance, Brent CCG) for his introduction and invited the Committee to ask questions, with the following issues raised:
The Committee queried the relevance of the Hansford review to Brent considering the report was themed wholly on the Tri-Borough CCGs of Hammersmith and Fulham, Westminster, and Kensington and Chelsea. Sheik Auladin (Managing Director, Brent CCG) explained that discussions were held with Brent CCGs and Clinicians for the review, which gave an overview of the fabric of the local population in Brent, as well as the engagement workshop held in Wembley. It was highlighted that the Hansford review looked at the entire End of Life Care pathway not just the inpatient service.
Members queried the definition of ‘substantial’ in relation to the requirement that any substantial changes as a result of the engagement period would be subject to full public consultation. Hugh Caslake offered examples such as if any key components of a pathway were removed or added, or if a change impacted a specific cohort. The decision to change existing services would be the responsibility of CCG governing bodies and associated NHS bodies.
In response to how the services in Brent compared to other services across the country, Hugh Caslake explained that they had information across the four boroughs included in the review but there was no benchmarking he was aware of. He highlighted it depended on availability of other services and how they were commissioned in other areas. Benchmarking would take some time and had not been done as they were responding to a specific local issue.
The Committee felt that there was no financial information or costings other than a small amount of information in Appendix H, and that more modelling would have provided greater assurances. Hugh Caslake highlighted that the level of work on resources would be expected if a decision was made, but no options had been costed as the scenarios were not intended to be fully costed operational models. James Benson (Chief Operating Officer, Central London Community Healthcare NHS Trust) noted that it was particularly expensive to care for people in a hospice. Bed day was often between £400-700 a night. He highlighted that if they used money and resource in the community the care delivered from the back of that was significant, and he would be looking at asking those questions of what else could be bought with the resources. Sheik Auladin added that there was no plan to cut services and cutting services was not the purpose of the exercise.
The committee queried what factors had been considered to avoid the closure of the Pembridge Palliative In-patient Service. James Benson advised that the medical director and himself agreed that Pembridge needed to be temporarily closed due to the inability to find a lead consultant. He expressed that all providers within the NHS and charitable sector worked in fragile systems where workforce needed to be considered. The question they considered was whether the entire system was able to get enough clinical leadership to run 5 hospices . Subsequent to the agreement to close, all the CCGs and the provider agreed that the Trust would not recruit a lead consultant in the presence of a review as they would not know the outcome of the review. During discussion James Benson confirmed that Pembridge day care on call specialists provided clinical decision making between 5pm and 8am in the morning, and if concerns were raised there was a 2nd on call as part of the system response.
The Committee noted that, of the engagement so far, only 0.009% of Brent residents had participated and queried how the 4 scenarios were valid. Hugh Caslake highlighted that the 4 possible scenarios were not recommendations but engagement devices designed to elicit resident views around palliative care options, and that a further engagement was underway which invited any resident to submit ideas. Specific Brent resident engagement to date had included a focus group and workshop and patient events at Hospices in and around Brent.
Regarding how older residents in the South of the Borough found out about workshops, Jonathan McInerney (Senior Commissioning Manager, Brent CCG) informed the Committee that an advert had been published on the Brent CCG website and communications had gone through Healthwatch and membership lists to potential patients. The CCG also worked with hospices to encourage attendance at the workshops. The Head of Engagement (Brent CCG) had used a contact list through the voluntary sector to ensure protected characteristics were covered. Julie Pal (Chief Executive, Healthwatch) expressed that the numbers in the report showed concern about the level of engagement and as well as circulating information to people the best methods of engagement were to seek face-to-face conversations.
Committee members highlighted that availability of beds needed in future was not considered in the report. Hugh Caslake responded that data showed the expected number of deaths would increase 30% by 2030. He advised that if the case was made for a particular approach capacity would need to be addressed, and the options presented from the engagement would need to explain how the proposed model would address changes and developments in the need for service over the next 15 years. Committee members felt the review could have addressed this.
Regarding Continuing Healthcare (CHC) beds, Sheik Auladin explained that the CCG fast tracked patients as part of the CHC process. The investment was in the region of around £8.5m. Patients were managed at home and within nursing homes, and the CCG were aware nursing homes in Brent were very limited and it was difficult to access beds for patients. There had been no major issues around not having beds for patients to go into nursing homes until recently.
In relation to paragraph 2.1 of the covering report to the Hansford review which noted studies showing that 70% of people preferred wanted to die at home but died in an institution, the Committee discussed the costs of End of Life Care. Dr M C Patel (Chair, Brent CCG) explained that the figure was from national surveys, and that those people died in hospital as a result of other factors, not because it was cheaper. He acknowledged that it was clear through national surveys and opinions that patients overwhelmingly preferred to die at home, and if they weren’t delivering that then it was not satisfactory. There was pressure from relatives, miscommunication and record management issues. Dr MC Patel addressed the need to hold early conversations with those who were dying and work with GPs to ensure patient wishes were recorded and carried out. Dr Lyndsey Williams (Clinical Director, Brent CCG) added that nationally the patients that were dying in hospital were those that wanted to die in hospital, and there was a patient review of where they would prefer to die. There was an opportunity to align local with national strategies to facilitate preferred patient care.Hugh Caslake confirmed that the percentage of patients who died in hospices was 6% in the most recent national quoted figures.
The Committee asked who would fund those who wished to die at home and what the impact to the Council would be. Sheik Auladin confirmed it would be the responsibility of CCG to support people to die at home, and that the CCG would work with the Local Authority’s Adult Social Care Team for adaptations to the home for those who wished to die at home.
Contrary to the data that 70% of patients preferred to die at home, Committee members noted that 80% of those who had 1 admission to a hospice preferred to die in a hospice, and felt that showed that there was a strong preference amongst those who navigated the hospice system to die there. Dr M C Patel highlighted that it was only a small proportion of the population, but took the point on board.
The Committee queried how much consideration had been given when appointing the independent reviewer to their previous links with hospices, to which Sheik Auladin highlighted that as Brent CCG did not commission the review they were not aware of the appraisal. Committee members felt that the review showed bias to a certain style of care and were unable to see other considerations within the review. They sought assurance that clinical practice was current. Dr M C Patel explained that the reviewer referred to the 2017 Best Practice report which looked at 68 care systems and determined what the best End of Life Care looked like.
Regarding option 4 and the establishment of a nurse-led service for patients who did not require specialist in-patient care, the Committee were informed that there had been an experiment in Leeds for those with complex conditions but did not need medical interventions, where a unit for those patients was ran by nurses. As a provider of hospices having a nursing lead specialist would mean the ability to provide a significant level of support and oversight of the in-patient service. The CCG would be asking questions over whether all hospices needed to be medically led or whether some could be run through nurses and therapists who would receive a significant level of training and support. It was highlighted that a number of hospices did not have a medic on site overnight.
The Committee queried what some of the findings were that had led to major challenge 2, inequality of access to services (paragraph 2.1) being identified. Dr Lyndsey Williams expressed that early identification was a national challenge, with the Hansford review supporting the national picture. The statistics were based on number of referrals made to specialist palliative care compared to the number of patients that died in hospitals.
Healthwatch’s view on the review was sought by the Committee. Julie Pal (Chief Executive, Healthwatch) responded that the majority of engagement done on palliative care was undertaken by colleagues in Central London Healthwatch, and found there was a disconnect between what people expected from clinicians and its delivery, such as lack of consultant conversations, which residents did not appreciate. Healthwatch were conscious of the fact the CCG had done historical work on engagement with palliative care and welcomed the use of it. Healthwatch wanted to reach out to Brent residents to capture what they wanted from palliative service, and Julie Pal expressed that she did not recognise that the models offered in the review were something the residents would want. Many residents had a desire to die at home which meant understanding processes, legal requirements, how a death became reported and how the process of end of life care could impact religious rituals. She also highlighted that Brent residents did not recognise the level of investment the CCG were putting in to palliative care.
At this point in the meeting the Chair exercised his discretion to allow Council Members and members of the public to speak. Each speaker was allocated 3 minutes.
- Councillor Mitchell Murray (Wembley Central Ward) addressed the Committee. She was of the opinion that presenting officers were underprepared and did not have all of the relevant information. She queried whether, during the review, those who had lost relatives had been spoken to. Councillor Mitchell Murray relayed her own family’s experience of using Pembridge Palliative Care In-Patient Service, highlighting the excellent care she felt her brother had received, and her disappointment that others would not have the same opportunity. She urged the CCG to rethink the scenarios which she felt lacked understanding of the impact the Pembridge Service had.
- Tessa Van Geldron (Brent Labour Party) also relayed her personal experience of End of Life Care. She expressed that when her partner was End of Life he received no care, visits or pain relief. A complaint to the GP received no response. She expressed frustration with the at home care option as it was not there when it was needed, and meanwhile services were being shut down. She expressed concern that the formal consultation would not say it would involve the closure of a hospice.
- Councillor Long (Dudden Hill Ward) told the Committee that she had attended the public engagement events. Councillor Long asked the following questions:
· Was there a plan to conduct engagement in the South of the Borough?
· What steps had been taken to contact carers about the workshops?
· What were Brent CCG doing about the expiration of the strategy that was developed as a result of the March 2017 review that was due to expire the current year?
· What would the CCG do to relieve loneliness with the closure of Pembridge?
· Why were fundraising attempts for Pembridge not taking place?
She highlighted that housing in the South of Brent was not conducive to home care due to small terraced housing, and a hospital bed would not fit in many houses. She concluded that engagement needed improvement.
- Diana Collymore (Patient Representative, Brent CCG Integrated Governance Committee) felt there was a barrier between the Council and CCG and that councillors should be involved. She highlighted that those from the council and other members of the public had not been informed of the focus groups and some of the reports the Committee were working on weren’t presented to the Committee, such as the report on patient voice in Brent.
- Councillor Lloyd (Barnhill Ward) queried why the Hansford review did not refer to the March 2017 review of Brent services, and why it did not involve Harrow who were involved with St Luke’s Hospice. She highlighted that while some of the report scenarios included the closure of 4-10 beds as a result of permanently closing the Pembridge, the Pembridge centre had more than 10 beds, and that missing from the report was the fast track CHC beds. She felt that residents were going to become reliant on charitable hospices.
The public and member contributions completed, the Chair asked for presenting officers to respond to any points raised.
Sheik Auladin acknowledged that South of the Borough needed to be engaged and would look for support from councillors to pull that together very quickly. He expressed that the place a resident received care would depend on the patient’s circumstances, and for those who did want to die at home they were looking at doing assessments to take into account the patient’s circumstances before the patient was cared for at home.
Dr Lyndsey Williams addressed the points around loneliness, highlighting that it was a very important consideration for End of Life Care as social isolation led to poorer health outcomes. Brent had recruited a Social Prescriber for every Primary Care Network (PCN) and was working on patient engagement with Local Authority and Voluntary Sector colleagues to support social isolation work. New posts had been approved to tackle social isolation and funding had allowed the CCG to follow through for those posts. She expressed that she appreciated councillors were dissatisfied with the level of tenant engagement but that the engagement work had been commended as an exemplar of what patient engagement should look like by the CEO of Healthwatch Central and West London.
James Benson apologised if communications had not gone to all historic users of the Pembridge service. He expressed that they had attempted to publicise the engagement process to all regular and historic users. Ongoing support was provided to families as well as patients in the last stage of their life. Regarding fundraising, the NHS constitution restricted him from raising money for the delivery of NHS care. He was able to raise funds for care not considered NHS care such as massages. He confirmed that the bed cost of Pembridge was no different than what a bed costed the charitable sector.
Further questions were raised regarding Social Prescribers. Dr Lyndsey Williams explained that they were band 4 employees, who were often of Social Worker background but that was not a requirement. It was a nationally open role for whatever the population needs were, for example in Kilburn the Social Prescribers supported patients with benefits, housing and the department for work and pensions. The Social Prescribers saw patients in the reception area and GPs could refer a patient to them. The prescriber talked through their available paths, and Dr M C Patel expressed he could see a role for them in palliative care.
The Chair drew the discussion to a close and invited Committee members to make recommendations, with the following recommendations RESOLVED:
i) To conduct a full consultation before a final decision is made on the final proposals.
ii) That in the development of potential options which involve the closure of the Pembridge unit there should be detailed consideration of the future care needs and population of Brent.
iii) That development of potential options should consider Brent’s most deprived communities. Benchmarking to be conducted with other London boroughs and best practice for palliative care as well as financial modelling for hospitals, hospices and home care.
iv) To demonstrate that a detailed and rigorous engagement had been carried out before developing the potential options for palliative care in Brent, and that no change is made until the results of the consultations are known.
v) That the whole system considers that appropriate specialist registrar leadership and training is provided in the development of a new model.
A number of action points arose throughout the meeting, with the Committee agreeing the following for Brent CCG:
i) To provide to the Committee the March 2017 End of Life Care review in Brent.
ii) To share with the Committee the demographic make-up of the Patient and Public Working Group.
iii) To provide to the Committee feedback about participants’ satisfaction with the public engagement workshops.
iv) To provide to the Committee benchmarking information on need in comparison with other London boroughs.
- 4. Brent CCG Palliative Care Report Cover Paper, item 4. PDF 2 MB
- 4a. Appendix A Penny Hansford Independent Review Palliative Care Executive Summary, item 4. PDF 642 KB
- 4b. Appendix B Penny Hansford Independent Review Palliaive Care Report, item 4. PDF 1 MB
- 4c. Appendix C Palliative Care Review of the Workshop Findings, item 4. PDF 2 MB
- 4d. Appendix D Palliative care services_Involvement document_February 2020, item 4. PDF 2 MB
- 4e. Appendix E Palliative Care letter to Stakeholders 3 January 2020, item 4. PDF 123 KB
- 4f. Appendix F NHS NWL Stakeholder letter Palliative Care 17 January 2020, item 4. PDF 191 KB
- 4g. Appendix G Mortality rates and preferred place of death, item 4. PDF 81 KB
- 4h. Appendix H current spend on palliative care services, item 4. PDF 35 KB
- 4i. Appendix I national guidelines on end of life care, item 4. PDF 58 KB