Agenda item

To receive an update on the End of Life Review from Tracey Jones, Deputy Director Integrated Care, NHS Telford Clinical Commissioning Group

Tracy Jones, Deputy Director Integrated Care, CCG and Alison Massey, Senior Project Manager End of Life Review were welcomed to the meeting.

Alison Massey took Members through a short presentation outlining the proposed scope and approach of the review – this would not be taking a traditional approach, rather one that involved using information already held - using a collaborative approach across organisational boundaries to design solutions. The expected timescale was six months and the purpose of the review was not to develop a strategy, rather to review how to make an impactful change on individual experiences.

Phase 1 of the review had just commenced and all stakeholders had been asked to review information they held and to identify themes and feedback to pose some questions and inform the work going forward.

Members asked a number of questions and received the following responses:

The report stated that a strategy was not the expected outcome but referred to ‘aspirations’ and appendix 1 was labelled as a strategy. What status did the document at appendix 1 have – who did it apply to, who had signed up to it and how was it co-ordinated throughout the system? What influence would this piece of work have across the whole system once completed?

Tracey Jones reported that the proposed methodology for the review had been shared with the groups across the system identified in section 1 of the report, and each had signed up to it. These included the organisations containing lead end of life clinicians.

The End of Life Review Group had been established as a sub section of the STP Community and Place Based Cluster which reported into the ICS Shadow Board. Phase 1 involved each organisation collating the information it held already to identify areas for action. Part 2 involved implementing that action through four key areas. Each area would have a system working group which would be made up of front line clinicians, managers and Healthwatch amongst others - key to developing solutions to the questions.

Some changes could be made by clinicians throughout the duration of the review to see if they could be made to work. This was an STP priority area and where any areas of difference or difficulty were identified, these would be escalated up to system leaders to identify how to remove barriers.

What quantity and kind of data has been collected - the Joint HOSC had experienced difficulties previously in seeking such data and information?

Each individual stakeholder had been asked to review information they already held to produce four questions. They had been asked to consider issues which were not to do with a single organisation but a pathway of care which was not connecting across the system.

Tracy Jones reported that the level of detail in PALS reports alone would be supplemented by individual one to one in depth interviews. If any JHOSC members knew of anyone willing to contribute to the review and share their experiences this would be welcome.

How many people would be interviewed as part of the review? The Joint HOSC felt that qualitative data was particularly valuable in this area.

Tracey Jones stated that that feedback would be sought from as many individuals as were willing to give it within the timeframe.

The Chair observed that the proposals sounded excellent but was aware of a person who was about to disengage with the process of giving feedback and hoped that any trauma experienced by others would not be exacerbated by participation.

Tracy Jones provided reassurance that she would be speaking to people individually to ascertain their willingness and readiness to participate in the review and would outline boundaries and expectations around contribution. She would be very supportive of anyone coming forward to share their story.

The Co-Chair referred to action proposed in the past to address end of life issues, which had not been successful. It was good to hear that a new approach was to be taken. He had heard of cases where do not resuscitate instructions had been applied without permission and it was essential that families be involved and treated in a respectful way.

It was acknowledged that the old approach had not delivered the changes needed and all organisations involved had accepted this new methodology. Consistency of approach would be very important. The whole end of life pathway was vast but the four areas would be identified collectively by stakeholders. The Joint HOSC were asked to identify if it felt that any stakeholders were missing from section 7 of the report.

The Co-Chair felt that the PALS system should be replaced by one organisation that applied across the whole of the system to enable a full picture when things went wrong.

Tracey Jones suggested that wider issues relating to PALS be raised with the Chief Officer of the CCGs.

How would the four areas to take forward be identified and agreed collectively?

All stakeholders should have an input in taking the long list into short list. The methodology used would depend on how many and how apart the areas identified were when responses came back from all stakeholders.

Can you provide the Joint HOSC with assurance that the stakeholders participating in the review will be of sufficient seniority to make the commitments needed in progressing this work?

The system had made a commitment to the work and lead clinicians in end of life care from each organisation were involved. There had also been a commitment made that the thoughts of front line staff be supported.

How will you measure impact of the work?

Measuring patient experience was difficult and comparing like with like was not possible. One reason there would be a focus on questions was to provide a basis for measurement – ‘how do you know that things have improved’. Participants in the review would be asked ‘how will we know if we make the change that we’ve got it right’. This might involve staff surveys and looking at both quantitative and qualitative data.

The timescale appears to be ambitious, particularly with activity planned over the coming weeks.

The timescales in the report provided an indication of the process but there would be a flexible approach if needed.

Would the Leads for the four areas be able to provide the time needed to the Review?

Key individuals leading on end of life in different organisations would provide the leads for each area. If there were any issues with availability then this could be escalated through the Cluster Board. The working day of individuals involved in the project involved end of life as their day job and contributing to service, system and patient improvements was part of their roles.

Lynne Cawley, Chief Officer Healthwatch Shropshire, emphasised the importance when talking to people of establishing when the event had happened, as some people could take a very long time to feel able to talk about experiences. She also suggested contact be established with the bereavement team at SATH where there might be an opportunity to ask questions that fit into the review.

It was also reported that Gordon Kochane and Jo Robins, Public Health at Shropshire Council had been working on bereavement support and may be useful contacts.

Tracey Jones welcomed these suggestions and said she would follow these up after the meeting.

The Committee thanked Tracey Jones and Alison Massey for attending the meeting and it was agreed that an update would be provided to the Committee at its 11 March 2021 meeting.