Notes from the Citizens' Panel meetings

In March, the panel discussed the presentation for the forthcoming public meeting on the Hospital Services Review at The Source, Meadowhall. They gave comments on the content and asked that there was more background detail available to enable members of the public to give their feedback. They asked for more information on:

• The current workforce and where they were located
• What workforce numbers needed to be
• The current and future costs of running the services 
• Future parking provision and the costs of travel
• Safe and best working practices for the services

They made comments on:

• The importance of involving ambulance services and public transport planners and providers in the work
• The need for clarity around options (as they are developed)
• The need to consider access and public transport 
• The importance of helping the public understand how to get the best from their services
• The need to make South Yorkshire and Bassetlaw an attractive place to work

The Panel also discussed the Equality Impact Assessment for hyper acute stroke services. They noted that the proposal in the consultation had only one option and suggested that future proposals include multiple options. They were pleased to learn that clinicians had been involved in developing the proposal.

They made comments on:

• The impact on people from minority backgrounds who might find it difficult to travel further to see relatives
• The impact on people on who have low incomes and those with mental health issues, as well as their carers and family members
• The impact on ambulance services and the need for more bariatric ambulances

In May the Panel met to consider:

• The latest hospital services review presentation
• Orthopaedics and the work looking at variances in follow up appointments for people who have had hip and knee replacements
• Lower bowel testing and work looking at the least invasive testing possible
• The latest hospital services review survey

In the hospital services review presentation item, the Panel commented on:

• How an overstretched workforce was measured
• The challenge of shortage of money and representing this in the presentation
• It would benefit from a statement to say this was just one area of work being looked at
• There was too much detail and too many acronyms in the presentation - it needed to be in plain English
• The need for more clarity on accountability
• The presentation was too long and needed to be shorter
• The need for more clarity on what a hosted network was
• Using infographics to help explain statistics

In the orthopaedics item, the Panel received a presentation on work just getting underway to look at the difference in follow-up appointments for people who have had a hip or knee replacement: The Panel was keen to be involved and as well as agreeing for the trial to be a regular item for discussion, one of the members volunteered to attend meetings of the trial work.

In the lower bowel testing discussion, the Panel heard about proposals for a process that would mean patients receive the least invastive tests possible. They were asked to comment on how best to involve patients views in the design.

In the survey discussion, the Panel asked for consistency in some definitions.

In June, the Panel met to consider:

• The Yorkshire and Humber111 service re-procurement
• A campaign to raise awareness of low cost medications

They heard updates from members on:

• Patient and public voice training
• A review of engagement events being attended by Panel members

In the 111 service item, they heard about the process underway to reprocure this service across Yorkshire and the Humber.  The Panel were asked to comment on the questions in the document which asked potential suppliers to participate in dialogue (a technical term which means enter into discussions about providing the service). The Panel fed back:

• The need to consider staff handling times and the economics of making it work
• The importance of staff understanding the geography of the region and helping people to do self-support
• The need to consider media, messaging and the cost of calls
• Accessibility to reliable interpreters
• Assessing anxiety-reduction trainiing
• The importance of the interface with the ambulance service
• The need to respond to any future changes to services
• The need to gather user feedback and how this would be done
• A suggestion to give a scripted example of someone accessing the service, ensuring this was done across diverse groups (like a mystery shopper)
• The importance of handling agitated and upset callers 
• The need to ensure the provision of a quality service for non-English speakers

The Panel put forward two members to continue to participate in the procurement process.

On the item about a campaign to raise awareness of the cost of medications, the Panel heard that following a national consultation, patients would be asked to pay for low-cost prescription medicine available over the counter at pharmacies and supermarkets to reduce the cost of cheap generic medication being prescribed on the NHS - for example, Paracetemol.

The ICS is developing a campaign to support this and is currently gathering insight into the barriers that people face to understanding the issue.

The Panel was asked to generate ideas for thoughts on who best to engage with in this insight phase and for their views on how to target and change behaviours.

They suggested:

• Presence at community groups to engage people
• Conversation with pharmacists - training pharmacists to support the work
• Ensure the information is on websites 
• Family hubs 
• Job centres
• Patient participation groups 
• Social media

In relation to effective messaging, they suggested:

• Talking about how the savings could be spent
• Consistency in the message of which drugs
• Using the TV screens in GP surgeries
• Public transport advertising
• Patients having the medication written down for when they go to the supermarket or pharmacy
• Working with local communities at sessions and events
• Consideration for people with learning disabilities, English as a second language and those on low incomes

For the update from members regarding their attendance at the training event, they reported the quailty of the training was good though it would have benefitted from more examples of where the patient and public voice has been used to good effect.

In the review of members' attendance at engagement events they reported:

• The supporting materials were helpful
• Leaving time for questions was important
• Lots of questions and discussions around mental health provision and maternity and what it means for local people
• Lots of questions about the training of staff
• Questions about the need to travel to hospital
• Relief that general hospitals are not going to be reviewed for closure
• Support for the Citizens' Panel and its work
• The presentation on the hospital services review was well received, with fair challenges

The Panel discussed how they could get involved in more conversations with local people, exploring the possibility of GP surgeries and hospitals. They also asked for a list of where conversations have already taken place, to help raise awareness with their local communities.​

In July, the Panel met and discussed: 

• The re-procurement of the integrated urgent care service across Yorkshire and the Humber
• Work to review FIT testing within the lower gastro-intestinal pathway
• The introduction of a Transport and Travel Group for SYB

In relation to the re-procurement of the integrated urgent care service:

The panel discussed how their feedback so far had been integrated into the engagement section of the tendering process and their overall weight in decision-making. At least one member of the panel confirmed they were able to take part in the dialogue discussions around the tender submissions and the group were informed they would recieve the tender submissions in time to input their scores at the next meeting of the Panel (9 August). 

Panel members asked questions about whether a helpline for people to discuss non-urgent issues was still available and how signposting to the service and also local support groups could be improved.

There was also a discussion about the merit of social prescribing and whether the new service could refer to local social prescribing support as well as GPs. It was noted that this should be taken as an action to scope in the next stage of 111 procurement. 

In relation to the lower gastro-intestinal pathway:

Members of the South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance attended the discussion to ask for Panel members' views on the updated pathway and how as patients they would like to collect the FIT test and be kept updated. The group were also asked whether they, as a group or as individuals, would like to be involved in the implementation group from September onwards. Written feedback was also given by the Panel to the Cancer Alliance team. 

In relation to the Transport and Travel Group:

The proposal to introduce a Transport and Travel Group, to run alongside the Citizens' Panel, was introduced to the group with the suggestion that a member of the Panel joins the new group, acting as a liaison between the two groups as well as the Transport and Travel clinical forum. The Panel were asked for their views on the proposal and for advice on recruiting patients and members of the public to the group. 

Questions were raised around: 

• The remit of the group and where it fit within the ICS workstreams (and review of hospital services)
• The frequency of the meetings
• How the group would challenge assumptions of realistic travel timeframes in regards to public transport
• What demographics need to be considered and how would these people be recruited to make sure the group is representative 
• Will routing options be tested - eg, to note challenges with peak transport times, parking and public transport connections
• Where the meetings of the group would be held as this could pose travel problems itself

Further items proposed by the Panel to consider when setting up the group included: 

·         Target dial-a-ride - people who volunteer to take people to hospital. 

·         Talk to people with ideas rather than objections.  

·         Should parking be a guiding factor as to where specific services are based (if services are being reduced in some hospitals).

·         Mix of people - villages and towns 

·         Ensure we take account of how people travel to appointments 

·         Frequency of travel (regular or one-off)

·         Volunteer driver support (Retford Drivers, Sheffield Community Transport etc.)

·         Rural villages need a say  

·         Drivers and non-drivers 

·         Deprived areas - people with less money to travel 

·         Disability Awareness - physical and learning needs 

·         Transport enthusiasts 

·         Someone from Passenger transport authority.

·         Planning for future transport projects (e.g. train-tram)

·         Recruiting - jobless in furthest possible place 

·         People local to hospital – impacted by increased traffic.

In August, the Panel met and discussed:

·         The latest developments in the review of hospital services

·         The planned launch of the partnership as an Integrated Care System

In relation to the review of hospital services:

The Panel discussed how the report had been published earlier in the summer and ways in which we could find new ways for more people to read and understand the recommendations. They received an update on the activity being carried out by the communications and engagement team to publicise the review and subsequent report and how the process itself is expected to be ongoing until 2020. The Panel asked whether this meant their tenure would be extended given they originally made a two year commitment.

In relation to the planned launch of the Integrated Care System:

The Panel received an update on how, up until this point the ICS has been operating in ‘shadow’ form and will formally launch in October. It was noted that the ICS still won’t be a statutory organisation but will continue to be a partnership of all health and care organisations with some of the region’s chief executives and accountable officers taking the lead on particular workstreams.

The proposal for an external bulletin about the work of the ICS was discussed, including how the Citizens’ Panel could be involved to help shape the content so their work and input is more visible

In September, the Citizens’ Panel met to discuss:

·         The ICS campaign with Standout Media “569 million reasons”

·         Names for the newly launching ICS public bulletin

·         An update on the work of the hospital services review

·         Recruitment to the Transport and Travel Group

In relation to the 569 million reasons campaign:

Members of the Panel received an update of the campaign from campaign partner, Standout Media, including receiving an overview of how their feedback and suggestions had so far been incorporated into the draft survey. Panel members asked questions around how the campaign will be promoted, including:

·         The limitations of social media in reaching all target audiences and how this will be addressed

·         How GPs will be involved and are there any messages they can already start giving to patients

·         How Parish Councils might be able to help

·         Ideas for attending flu and other drop-in clinics to gather feedback

 In relation to the naming of the new public bulletin:

The Panel discussed their name suggestions so far and ideas for wider content – eg, could the Panel members have a monthly feature?

In relation to the work of the hospital services review:

Panel members asked whether there was any update on the next stages of the work and how they, and members of the public, would be involved in next steps. A discussion was had around the next stages in the modelling of potential options and looking at the impact of them in terms of access and transport. It was confirmed to the group that work was ongoing and the recommendations of the report were still being discussed by partners before next steps were agreed.

In relation to the Transport and Travel Group:

The Panel heard that recruitment to the Transport and Travel Group had begun and is being supported by Co:Create. The Panel heard that the group will have 10 members, with two from each area; a driver and a non-driver. It was confirmed that the meetings will be bi-monthly and will include transport company input.

Panel members asked questions around:

·         How the public group and the clinical group would feed in to each other

·         Whether rail companies would be engaged

In October, the Panel met and discussed two key areas of work:

·         The South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance

·         The mental health workstream of the ICS

In relation to the Cancer Alliance:

The communications and engagement lead for the Cancer Alliance attended the meeting to provide an introduction to and overview of the partnership. The group heard about the Alliance’s work to support the meeting of national cancer waiting time targets, the importance of raising awareness of signs and symptoms and patient choice around treatment options.

Panel members asked questions about:

·         The equity of specialist services across the region

·         The equity of diagnosis across the region and whether this varied amongst demographics

·         The input clinicians have in making a difference to waiting times

·         Whether more cancer nurse specialists could be based within primary care to support demand

·         Whether people with learning disabilities had been taken into account as a target audience in any awareness raising campaigns

In relation to the mental health workstream:

A member of the mental health workstream attended the meeting and talked the Panel through the ICS’ priority areas for mental health:

1)      Stopping out of area placements (including complex dementia)

2)      Perinatal Mental Health (pregnancy up to 1 year after birth/including partners) 

3)      Children and Young People crisis pathways – care closer to home

4)      Autism/ADHD – currently there are enormous waiting lists and few support service

5)      Employment – People with MH conditions/ Musculoskeletal conditions (MSK) and help people to stay in work

6)      Suicide prevention – SYB has received £555,000 in funding as we have one of the highest suicide rates in the country

Members of the Panel asked questions around:

·         Risk factors that increase the risk of suicide, eg deprivation, drug and alcohol addictions

·         Whether the work was achievable within resource requirements

·         The scale of mental health outreach and what more could be done

·         Work within schools to raise awareness of mental health conditions and support available

In January 2019, the Citizens’ Panel met and discussed:

• An update on the South Yorkshire and Bassetlaw Integrated Care System (SYB ICS)
• Shaping the Social Prescribing offer for SYB
• Involving patients and the public in the next phase of the hyper acute stroke services work

In relation to the update on SYB ICS update

The ICS Associate Director (AD) of Communications and Engagement attended the session and thanked the Panel for their ongoing support and input throughout the first year.

Members were introduced to the Long Term Plan, which is a continuation of the Five Year Forward View. The AD explained that there is now an opportunity for the public and partners to give their feedback on the themes in the Plan in relation to SYB and that the ICS would formulate a local response to the Long Term Plan. Members heard that this would be done by getting the conversation right, looking at what conversations have already been had with people locally and then making sure we reached out to all communities. The Panel was asked to support local conversations where possible.  . 

Questions were raised around:

• Funding to support the Long Term Plan
• The importance of working with Healthwatch

In relation to shaping the SYB social prescribing offer:

Members heard from the ICS Prevention Programme Manager who explained how social prescribing is a way of linking patients and people accessing care with local non-medical sources of support. It recognises the importance of psychological, social, environmental and economic factors in health and wellbeing and health inequalities.  It can happen alongside or instead of a medicalised approach.

It is an ICS priority as is the expansion of the service offer across SYB to increase access for a wider range of residents. The ICS is reviewing the approach to working collaboratively with partners and will develop a five year discussion document and call to action. This is an opportunity for people and partners to help contribute and shape the social prescribing offer. 

The Panel was invited to be involved in the development of the work and if there were specific or other areas that should be explored as part of the strategy.

Questions and comments were raised around:

• This was one way people could take control of their own health
• The issue of rural areas and transport/access - making it difficult for people to maintain/offer a set period of support particularly for those with poor mobility.
• Rotherham has been a flagship for social prescribing but funding is an issue to sustain these sources of support.

In relation to involving patients and the public in the next phase of the hyper acute stroke services work

The Panel received an update on the work so far to transform the way hyper acute stroke services were provided across SYB. At a previous Panel meeting, members had raised the importance of the needs of patients with mental health conditions and asked that this was considered as part of the work to implement the changes. At the session today, they learned that as a result the patient flow policy had been updated. 

The Panel was asked for their views on the next phase of the engagement and how best to involve and inform patients and their families.

The Panel fed back that they felt much had been done in the earlier stages of work but after discussions shared the following suggestions:

• Think about provision for carers/family members
• Work with the voluntary sector to communicate this work and where they could support people out of area.
• Awareness raising with First Responders
• Patient information was a common theme – materials to be passed on in the back of an Ambulance
• Raise public awareness about it and promote the benefits not just the cost benefits
• Clarify expectations for the family members
• Build on the FAST campaign
• Work alongside agencies such as stroke association/those supporting carers
• Clear lines of communication to ensure that a patient is moved back to their local hospital and their family are kept fully informed

In February 2019, the Citizens’ Panel met and discussed:

• The QUIT Programme; Tackling Tobacco in Hospital Settings
• An update on the Hospital Services Review
• Joint working approach – thoughts on the partnership working for Bassetlaw straddled by two ICS

In relation to the QUIT programme

Members were joined by the ICS QUIT programme lead and learned about the QUIT programme and the ICSs three prevention priorities.

• Embedding the treatment of tobacco dependence in secondary care
• Identification and management of clinical risk factors for Cardio Vascular Disease
• Expansion of social prescribing

Smoking remains the biggest public health threat. The QUIT programme is an evidenced based approach to targeting active smokers in hospital settings. It is an opportunity to change the culture of smoking in hospital settings as it treats smoking as any other long term condition such as blood pressure. It also seeks to give professional/clinical staff the confidence and competence to support smokers and be the best role models. The aim of the programme is to make hospital grounds fully smoke free, ask people their smoking status upon booking in and providing nicotine replacement therapy (NRT) within six hours. Consistency in this approach is imperative. 

Hospitals have a unique opportunity and provide a ‘teachable’ moment where smokers can be supported with a new approach.  

Members asked questions on:

•                     The likelihood of making a hospital a smoke free zone, given it is often a stressful time for people

•                     The impact on patients with mental health difficulties

•                     The medicalisation of smoking

•                     Extending the focus in the future to children as well as adults

In relation to the hospital services review update

A discussion was held on the latest progress in the Hospital Services Programme, specifically the current developments around Hosted Networks, including hosting arrangements, form of the networks and resourcing them. Members also discussed clinical models.

Each of the Acute Trusts in South Yorkshire and Bassetlaw has agreed to be the ‘host’ to lead a network for one of the five services covered in the Hospital Services Review (HSR). A recent press release can be found on the ICS website

Members asked questions on:

•                     The criteria for selecting the hosted networks

•                     Research into the way of working

•                     Engagement with staff

•                     Public engagement

In relation to joint working across Bassetlaw

There is a need to involve the public in the Long Term Plan in order to develop the ICS five year plan and plans are underway to ensure the people across SYB have the opportunity. Bassetlaw sits within both the SYB ICS and also Nottinghamshire ICS. The Panel were asked for their views on how best to have the conversations with people in the area, given both ICSs are carrying out engagement.

The Panel discussed how best to approach so the feedback is consistent and ensure that the work of Healthwatch and local partners makes sense to the public. This included making the narrative clear for local people and for the evaluation of the feedback to be shared across both ICSs.

In March 2019, the Citizens’ Panel met and discussed:

•                     Healthwatch and their approach to engagement on the Long Term Plan

•                     Feedback from Panel members on the Kings Fund event

•                     Pathology services briefing

•                     Equality  Impact Assessments and involvement

In relation to Healthwatch and engagement on the Long Term Plan

Members heard from Healthwatch Doncaster, which is leading on the co-ordination of the NHS Long Term Plan (LTP) for Healthwatch organisations in SYB. Each Healthwatch has been asked to complete a minimum of 250 surveys and two focus groups. 

In terms of engagement activity from SYB ICS partners, there are a number of opportunities including focus groups, online surveys and regional wide engagement events between now until July. The approach will also include two events to be held at the Source on the 6th June that will run in the morning and evening, providing an opportunity for working people/different groups to engage in the SY conversation. Panel members were asked to support the conversations and raise awareness of the survey.

Questions from the panel included:

•                     Alignment with the Hospital Services Review

•                     Important to ensure local plans and regional plans were aligned

In relation to feedback from Panel members on the Kings Fund event

Three panel members had attended a recent King’s Fund event in Leeds. The event was designed for anyone working in the NHS, public, private, academic and third sector to gain a greater understanding of how the health and care system currently works and how it is changing.

In relation to Pathology services

Members read a paper about the South Yorkshire and Bassetlaw ICS Pathology Transformation Programme.

In 2017, NHS Improvement (NHSI) published requirements to change pathology services across the country so that we can all better manage the work, better plan for the future and make the service as high quality and responsive as possible.

It was agreed there wouldn’t be any impact on patients across SYB in the foreseeable future. Future updates will be shared with members when timely and appropriate.  

In relation to feedback on equality impact assessments and involvement

Members were asked for feedback on the ICS internal approach to equality impact assessments and involvement for programmes and projects.

 

In April 2019, the Panel met and discussed:

-        Gluten free prescribing

-        Urgent and Emergency Care Programme 999 Ambulance Calls - Diversionary Pathways

-        Hyper Acute Stroke Patient Leaflet for Review

 

In relation to gluten free prescribing

Rob Wise, Head of Medicines Management for Bassetlaw CCG and lead for ‘over the counter’ (OTC) workstream gave a short presentation providing background for the project and led a discussion with panel members.  

Nationally the Department of Health undertook a consultation in 2017 and then agreed to recommend a limit to the prescribing of gluten free products to just bread & mixes (and no other gluten free foods).

In South Yorkshire and Bassetlaw, four areas (Barnsley, Bassetlaw, Doncaster and Rotherham) currently all have similar recommendations regarding prescribing of gluten free products, i.e. to follow the outcome of the national consultation and only prescribe bread and mixes.

• Barnsley has gone a little further in that it restricts the recommended amount of bread and mixes prescribed to 8 units per month.
•  
• Bassetlaw, Doncaster and Rotherham are following the Coeliac Society recommendations for the number of units of bread and mixes prescribed (an example is that this can be up to 18 units per month for a male aged 19-59. 18 units is equivalent to 8 x 400g loaves of bread).
•  
• Sheffield consulted in 2017 and restricted the prescribing of ALL gluten free products to adults, including bread and mixes.

Conversations are now taking place in South Yorkshire and Bassetlaw about whether it is fair to local patients that where they live dictates what they can get on prescription.

It is recommended that the CCGs for Barnsley, Bassetlaw, Doncaster, Rotherham and Sheffield undertake public engagement to gather public perceptions on potentially changing the prescribing of gluten free products in some parts of the region so that it is all inline and ensures equity of access to products

The CP members felt it was important that all local areas prescribed the same and it not being a postcode lottery. They felt it should be about equity rather than cost saving.

Equity of accesses (making things equal) is a fundamental principle of the NHS, particularly if going down to the lowest option without a safety net. Further consideration should be given to rural areas where they would struggle to get products from their local store. There needs to be more signposting to online websites and companies that deliver.

Members asked questions on:

-        Level of need for gluten free

-        The national position

-        Differences between gluten intolerance and coeliac disease

-        Reaction to newly introduced changes in Sheffield and reaction of local people

-        Consideration of social care aspects that can potentially offer support if items are withdrawn

 

In relation to Urgent and Emergency Care Programme 999 Ambulance Calls - Diversionary Pathways

The Yorkshire Ambulance Service (Yorkshire and Humber) receives 1 million 999 calls per year. In

South Yorkshire approx. 320,000 999 calls per year circa 62,000 (19.4%) don’t go to hospital.

 

Benchmarking in terms of national policy requirements and expectations:

•Urgent and Emergency Care National Strategy – “up to 50% of 999 calls can be managed at the scene”

•NHS Operational Plan for 19/20 – “increase rate of ‘non-conveyance’”

•NHS Long Term Plan – boosting out of hospital care, improving clinical advice out of hours and to care homes, increase number of 999 callers that don’t get to hospital (appropriately)

Some key areas were highlighted to the panel in terms of respiratory (particularly during winter demand), care homes and mental health. This work is being undertaken in association with the Academic Health Science Network.

 

Members asked questions on:

-        Elements that need to be considered to provide more support to patients and paramedics to avoid hospital attendance

-        Experiences of calling 999 and being taken to hospital

 

In relation to Hyper Acute Stroke Patient Leaflet for Review

This year (2019) anyone who has a stroke in Barnsley, Bassetlaw, Doncaster, Rotherham or Sheffield will be taken directly to: Doncaster Royal Infirmary in Doncaster, The Royal Hallamshire Hospital in Sheffield or Pinderfields Hospital in Wakefield for this first part of their care. All of these places provide 24/7 specialist care and clot-busting treatments for people who have had a stroke and have highly skilled, specialist staff available.

Members were presented with a patient leaflet for the regional Hyper Acute Stroke Service. The leaflet has been prepared with feedback from the Stroke Association and has had input from many partners and groups. The group provided constructive feedback in terms of the language used and the flow of information. 

The group were informed that the leaflet would only be received by those who are taken for this specific treatment and when not taken to their nearest Hospital (e.g. Patients from Barnsley, Rotherham and Bassetlaw). They were advised that their comments would be taken into consideration as it continues to be developed and assured it will be ‘reviewed’ by future patients alongside a Stroke Nurse.

In term of the design it will be considered by the stroke aphasia group (a stroke can affect one’s ability to find the right words, to understand what others are saying and/or reading and writing) who will advise on the visual layout and design. A comprehensive communications plan will support general awareness rising around the hyper acute stroke service in SYB. 

It was agreed that the Panel would not meet in May.

In June 2019, the Citizens’ Panel met and discussed:

·       The Hospital Services Review – Latest Position

·       Gluten free prescribing

·       Stoma Briefing Paper and 14Z2  

·       Panel Dates moving forwards /attending the JCCG

·       Long Term Plan

 

1. In relation to The Hospital Services Review – Latest Position:

James Scott presented for the panel the latest position in relation to the Hospital Services Review.  Following discussions in March and April 2019, Chief Executive Officers and Accountable officers concluded that the system was supportive of the approach to shared working between trusts. Work should go forward as quickly as possible on developing the Hosted networks.

The Hosted networks will be our principle vehicle for transformation which includes:

 

Paediatrics – Sheffield Children’s Hospital

Urgent and Emergency care – Barnsley

Gastroenterology – Doncaster and Bassetlaw

Stroke – Sheffield Teaching Hospital

Maternity – Rotherham

 

Questions from the panel included:

• Our approach to deliver meaningful engagement with relevant stakeholder groups through the Hosted Networks’ programmes

 

2. In relation to Gluten Free Prescribing

The CP expressed that they were happy with the 14Z2

There was a discussion regarding the timeframe for submission to the JCCG.

The CP would like to be updated on a regular basis when the information they have given is included in any ICS work.

 

3.     Stoma Briefing Paper and 14Z2  

Across England, stoma appliance use and associated spend is rising.  Stoma appliance spend was projected to reach £277m in 2018, with annual spend growing an average of 5% per year. Across SYB and Bassetlaw spend patterns are similar. Our regional stoma services are commissioned and delivered in a variety of different ways. Typically acute stoma care is provided through intensive pre-post-operative periods by NHS or Dispensing Alliance Contractor Funded Posts, which may affect the products they prescribe.

From work undertaken in Rotherham in 2011, this leads to wastage and or over/under ordering with most patients experiencing problems at some point. Rotherham significantly redesigned their pathway to address issues: however the picture across SYB is inconsistent and there are many opportunities to provide a better service for patients in a more efficient way.

Work undertaken so far has included a need to understand the local picture.  Using data mapping, a workshop with CCG heads of medicine management, local stoma nurses, business managers and colleagues from finance.  Rotherham engagement highlighted some of the issues experienced by patients. The plan therefore is to undertake additional patient engagement to re-design the questionnaire and deliver a fuller patient experience scoping exercise to shape the work.

 

Questions from the panel included:

•  - Queries around how and where panel members be focussing their engagement

 

4.     In relation to Panel Dates moving forwards and attending the JCCG

Members discussed the frequency of meetings and it was agreed that moving to bi-monthly meetings was acceptable.  Members asked that meetings be arranged well in advance and dates circulated promptly and a further email should be sent following recruitment to determine whether the later meetings did in fact enable more members to attend. Members met the two Lay members who will be acting as Chairs following Tom’s departure.

 

5.     In relation to the Long Term Plan

Members were given the timeline for the development of the SYB five year plan. Members would like to see the draft plan once it is available. Members would like to see the engagement report once available through DJS. Members welcomed the opportunity to be involved with the planning date scheduled for the 9^th July.

In August 2019, the Citizens’ Panel met and discussed:

• ICS Funding letter
• Stoma
• LTP Pack
• MH LD
• The Hospital Services Review – Latest Position
• Avastin
• Other areas  

In relation to ICS Funding letter

The group questioned why GP/independent companies obtain funding but nothing is given to hospitals. This is in relation to the letter that has been sent out by Sir Andrew Cash.

A breakdown of funding will be provided and made available at the next CP meeting (and added to the agenda)

The group queried why Barnsley is not receiving any funds.

In relation to Stoma

ICS provided an update on the Stoma programme. The first phase questionnaire is now going out via GPs and Pharmacy to stoma patients (it is being sent in this way for GDPR reasons). ICS explained that demographic data has been removed. Fiona discussed that data would be a lower quality without demographic data. 14z2 approved

The group requested an update under AOB for the next meeting.

In relation to LTP Pack

ICS shared an update on the current LTP planning. The group asked for regular updates on this. The group noted the focus on workforce engagement.

In relation to MH LD

The Programme Director, Urgent and Emergency Care, and Mental Health and Learning Disabilities at the ICS introduced a new service for employment support. This is specifically aimed at supporting people with serious mental health conditions. It was noted there is an existing service for people with mild conditions.

The ICS explained that the service has a real focus on lived experience. The group felt that both the links to professionals and the limited caseloads were positives. The ICS explained this was very much patient led and discussed that ongoing employer support is key. Regarding the procurement, the ICS explained that it is currently at a standstill stage but letters would go out next week. All the panel members present approved the decision.

In relation to The Hospital Services Review – Latest Position

James Scott presented for the panel the latest position in relation to the Hospital Services Review.

It was discussed that HSR had previously recommended reconfiguration but now says no reconfiguration. The hosted networks was also discussed.

In relation to Avastin

The ICS discussed a change to medication for wet age related macular degeneration (wet ARD) and explained that clinical outcomes are the same. Matt discussed that ‘unlicensed’ was a difficult word. The group approved this.

In relation to Other areas  

Briefed the CP on the recent travel and transport group including the changes to bus times.

In October the Citizens' Panel met and discussed:

• QUIT
• Autism
• Childrens/ Maternity webiste
• Polypharmacy
• Gluten Free

QUIT

Ginny Fieldsend who works in Public Health for the SYB ICS provided an update on the QUIT programme. The QUIT programme will see the implementation across all acute Trusts and mental health Trusts across SYB of the treatment of tobacco dependency in secondary care and then onward referral to stop smoking services. It recognises that tobacco dependency should be seen as a chronic relapsing clinical condition that prematurely kills. It is in line with commitments in the NHS Long Term Plan that by 2023/24 all people admitted to hospital who smoke will be offered Ottawa style NHS funded tobacco treatment services.

Questions from the Citizens Panel, and answers from Ginny Fieldsend:

Q: How are you going to stop people smoking outside hospital doors?

A: It won’t happen overnight, it requires a massive culture change, particularly with some of our staff, but we hope to encourage and empower them to stop smoking. NRT will be offered on admission to all patients who smoke or vape with nicotine-containing products.

Q: Is this a government priority?

A: It is in the Long Term Plan. We are the first ICS or STP to roll it out on this scale. It has been very successful at Wythenshawe  hospital in Manchester so we are basing what we do on that and what was done in Ottawa in Canada.

Q: Are electronic cigarettes a quit aid or not? And do the hospitals have clear guidance on that?

A: We are currently working through the pathways with the hospitals. We continue to follow current NICE guidance and PHE guidance on this.

Q: Is there a walk in stop smoking service for people not in hospitals?

A: All areas have a community stop smoking service but how they deliver services is different in each area.

Q: Is a 4 week follow up in a community setting long enough?

A: We will be following up their quit status at 4 weeks and 12 weeks but that doesn’t mean their community stop smoking support will just be 4 or 12 weeks, it is on a case by case basis.

Autism

Jenna Wallhead who works on mental health and learning disabilities for the ICS spoke about the outcomes of an Autism workshop held on the 10 October 2019, and the priorities identified at the workshop. The workshop was co-produced by Speak Up, and had representation from schools, health, voluntary sector organisations, social care, police, experts by experience, parents and carers. Patient stories supported the workshop. She also gave feedback on proposed next steps, including engagement with hard to reach groups.

Jenna talked about the three priorities identified in the workshop: Education, Physical health and wellbeing, and employment and asked the CP for their opinion on how patient/ public voice should play into the development of these priorities into actions going forwards. The CP felt a group of patients/ carers could be brought together to work in an ongoing way with the three task and finish groups for each of the priority areas, and that this would be better than expecting one or two people to sit on the task and finish groups and represent the voice of their communities.

 Questions from the Citizens Panel, and answers from Jenna Wallhead:

Q: Will there be a clear commitment at some point from the ICS to addressing issues faced by people with autism?

A: We will use the pledges that people made on the 10^th October to help shape a clear commitment.

Q: Are you looking at learning from elsewhere?

A: Yes, particularly Manchester and West Yorkshire. Also much of what we are hearing from patients and their carers in SYB is mirrored in national research.

Q: How much pressure can the ICS put on education colleagues?

A: We are trying to ensure their engagement in the work going forwards. There were engagement representatives on the 10^th and there was a commitment in the room to change.

Childrens/ Maternity website

James Scott who works on Childrens and maternity for the ICS spoke about a proposal to introduce a Healthier Together Website for SYB to support young people and their families with their health needs.

Questions from the Citizens Panel, and answers from James Scott:

Q: Why is it different to what’s there already?

A: This is about providing a resource that clinicians would feel comfortable signposting their patients to so clinical engagement is key to making this work. It would contain both a space for clinical professionals to store / access guidelines, etc., and public facing areas, making sure that advice and signposting matches our local clinical guidelines and protocols.

Q: If you decide to take this forward and create this for SYB will you engage with grandparents and seldom heard communities to ensure it fits local need?

A: Yes

Q: Is there a live chat function on it?

A: I understand there could be but it is not something we have explored.

Q: Can less well educated people access this website okay?

A: If we go forward and develop this for SYB we will work with people who are less literate when developing it to make sure it is right for all of our communities. That will also include helping describe and illustrate some of the conditions featured on the site.

Q: Are other parts of the country looking at having this?

A: Yes but we want to be ahead of the curve. It’s been used really successfully in Hampshire – it cut emergency attendances. It does take some time and effort to get it to take full effect, so we want to move ahead with this.

Q: Is it value for money?

A: Because we would be taking an existing site (Hampshire) and adapting it, it would be much more cost effective than starting from scratch. Evidence from Hampshire is that it is successful in supporting people to manage their own health better.

Q: What did Hampshire do to get clinician/ pharmacist buy in?

A: Lots of work – lots of going out to show clinicians and other healthcare professionals the site. We would invest in doing the same.

Q: How are you going to make sure the site is known about and used? Particularly with more seldom heard communities?

A: Clinical buy in is the key. We could do big marketing campaigns but the key to making this work will be clinicians and healthcare professionals recommending it to patients and the public. But making sure that it has a presence, e.g. via social media, fridge magnets, the things that people have in their eye lines,

Q: What are the next steps?

A: A business case will be developed. The feedback today from the CP, and some of the things you’ve pointed out that we would need to do, will help inform that business case.

Polypharmacy

Khalida Rahman who is a programme manager from the Yorkshire and Humber Academic Health Science Network (AHSN) talked about a pilot programme that is running in SYB – the polypharmacy project (Polypharmacy is the simultaneous use of multiple drugs to treat a single ailment or condition, or the simultaneous use of multiple drugs by a single patient, for one or more condition). This project focuses on piloting systematic medication reviews for people with polypharmacy. 

Questions from the Citizens Panel, and answers from Khalida Rahman:

Q: Will pharmacists go into care homes?

A: There is medicines review work happening in care homes as part of a different project. This is a small project looking at five patients who are at risk of frailty per GP practice.

Q: What’s the ultimate aim of this project? Saving money or reducing harm?

A: Both – stopping patients taking medicines that they don’t need and therefore reducing the potential harm to them is the key driver but stopping people taking medicines they don’t need will also save money that the NHS can better spend elsewhere.

Q: What are you giving people instead of medicines?

A: Sometimes they might not need medicines but would benefit from a referrals/ signposting to other forms of support.

Khalida explained that a training event had been scheduled in November with the pharmacists who would be undertaking the polypharmacy medication reviews. This would include information around the other services/support available for patients within the SYB ICS area to help them manage their long-term conditions. An invite was extended to the citizens panel members to attend should they wish as it was thought that this would be helpful for the pharmacists to be able to appreciate some members of the publics’ viewpoints.

Gluten Free

Rob Wise, Head of Medicines Management at Bassetlaw CCG and SYB lead for gluten free gave feedback on the current position regarding gluten free and public engagement. The Joint Committee of Clinical Commissioning Groups has agreed to undertake a period of engagement to assess the appetite for aligning prescribing levels across SYB. The plan is for this engagement work to be targeted engagement work. The Joint Health Overview and Scrutiny Committee will discuss this work at their next meeting.

Questions from the Citizens Panel, and answers from Rob Wise/Katy Davison:

Q: Can you access data on how many diagnosed coeliacs access foods on prescriptions vs how many don’t?

A: Only 10% of the population with Coeliac disease access prescriptions

Q: What will coeliac’s do if they can’t get gluten free products on prescription any more?

A: It is entirely possible to live a very healthy and balanced gluten free diet. Many natural products do not contain gluten – including fish, meat, fruit and vegetables.

Q: What are you asking people in this engagement?

A: A draft survey is currently being developed and we would be happy to share it with the CP for views

Q: Why are you talking about this being targeted engagement?

A: At this stage we feel it is important to have conversations with a range of stakeholders who we perceive will have an important view point on any potential change so we specifically want to target attending conversations with them.

In January the Citizen's Panel discussed:

Avastin

Rapid diagnostics

Children's surgery and anaesthesia

1. Avastin

Kenny Li works on behalf of the medicines workstream for the ICS advising on the potential offer to patients of avastin. He provided an update on avastin and why the ICS is considering whether it should be offered as an treatment option for wet mascular degeneration (wet AMD). He also gave an overview of a legal challenge that has been made in other parts of the country where they’ve tried to offer avastin. The legal challenge is from the pharmaceutical industry. He asked the CP for their views on the offer, and for feedback on a patient information leaflet that has been used elsewhere in the UK, something similar to which would be required if the offer was to be made to patients in SYB. Following questioning the CP said that they fully supported the offering of Avastin as a treatment option in SYB and that they would like a further update at a future date.

Questions from the Citizens Panel, and answers from Kenny Li:

Q: How far did the NE get in their plans to roll this out before the had to stop because of a court case?

A: No avastin treatment has been given.

Q: What would be the clinician to patient conversation?

A: Open and honest. These are all your options, select the one that’s best for you. In other places where it has been offered approx. 50% of patients have opted for avastin.

Q: How are you going to ensure that clinicians don’t lead vulnerable patients into their preferred choice?

A: Rigorous audits of clinicians, thorough provision of information and detailed consent procedure.

Q: Are there any patient groups for wet amd and will we engage with them?

A: Yes absolutely.

2. Rapid Diagnostics

Liz Howarth who works for the Cancer Alliance on Rapid Diagnostics explained about the government’s 5 year strategy to improve early diagnosis of cancer. She explained that the UK still diagnoses at a later stage than diagnoses take place in other countries. Following questioning the CP thanked Liz for an interesting presentation and said that they though the project looked like a positive way forward and they look forward to future updates.

Questions from the Citizens Panel, and answers from Liz Howarth:

Q: What engagement is taking place?

A: Liz confirmed that patient experience and engagement is taking place to help shape the models.

Q: Is artificial intelligence being looked at?

A: Yes, for radiology in particular.

Q: How will the offer differ from what happens now?

A: The pathways will be clearer, particularly for non-specific symptoms.

Q: What about self-diagnostic tests?

A: We will definitely be looking at the opportunity to invest in more near to home diagnostics.

Q: Will you be getting volunteers to support people when they get their diagnosis?

A: That’s a good idea. The engagement we’ve done also tells us people want that. Some of this happens now but it’s variable across the patch. Part of this programme is about reducing variation.

Q: Will there be an awareness campaign around this? With GP support at the heart? People will be anxious about increased speed of diagnosis.

A: This is about addressing the issues patients have with the currently system and making experiences better.

3. Childrens surgery and anaesthesia update

Anna Clack who works on the Childrens workstream for the ICS spoke about changes to the children’s surgery and anaesthesia work since the CP last heard about it and talked about the new proposal to keep most surgery happening in DGHs as it currently happens, with just a small number of appendectomies on children under 8 and with complex needs moving to Sheffield Children’s Hospital. Following questioning the CP said they agreed with the project managers who are putting forward that it should be engagement not full consultation.

Questions from the Citizens Panel, and answers from Anna Clack:

Q: Would you take your kids to your local hospital with a torsion of the testes? Are you sure the care will be equal in all places?

A: Yes.

Q: Will this go to Trust Boards?

A: Yes.