Think.Carer: Building Health Partnerships - Partnership Session 3

1. ‘Think Carer’Building Health Partnerships Partnership session 3 Wednesday 31st January 2018 @IVAR_UK @SocialEnt_UK #BHPselfcare

2. Introduction ‘This whole programme is based on engagement with carers… they are saying: please recognise, value and listen to us!’ On the 31st of January 2018 the Herefordshire and Worcestershire ‘Think Carer’ group met for the third time in Malvern. The event was attended by carers and representatives from the NHS workforce the sustainability and transformation partnership (STP) and the voluntary and community sector. The purpose of the meeting was to: • Continue work on ‘BHP Think Carer’ – updates, priorities and support • Revisit the engagement exercise - what it is that Carers said they needed in the original engagement exercise and what has happened so far? • To support staff and carers to have a different (and new) conversation around new ways of working together • Maintain momentum and interest across the two counties/STP footprint The workshop built upon two previous partnership meetings (see notes and presentations) and three core group meetings to date.

4. Updates • Sue Harris reminded us of the purpose and role of the Sustainability & Transformation Partnership (STP) working across both Herefordshire and Worcestershire. The focus of this work is integration between health and social care. As part of this Sue talked about the need to reduce the ‘intensely frustrating duplication experienced by Carers’ by embedding priorities for Carers across the STP and getting partners to sign up to practical actions. The aim is also to change culture and make sure everyone in the system is aware of what a Carer is and where to signpost/refer them if they are unable to offer support. • The Herefordshire and Worcestershire Carers Joint Scrutiny (HWCJS) group – set up following the second BHP meeting - has met three times and is tackling a number of important issues including: • Taking the NHS England MoU Commitment to Carers An integrated approach to identifying and assessing Carer health and wellbeing MoU (page 22-26) to the STP Board and asking them to sign up. This is the first time the STP Board has been made directly accountable in this way. To date all health bodies have agreed to this commitment”. • The HWCJS have been asked to contribute to some work the STP is undertaking around workforce. • Members of the partnership attended a session on Confidentially held by WAC – an issue that has been highlighted as a particular issue for carers. Key points included: reminding carers that they can use NHS policy as a lever to hold staff to account when they say ‘I cant talk to you because of confidentiality’. • Identify workforce needs and share learning from Herefordshire Triangle of Care (Partnership 2 meeting)

5. An integrated approach to identifying and assessing Carer health and wellbeing - Memorandum of Understanding Principle 1 – We will support the identification, recognition and registration of Carers in primary care. Principle 2 - Carers will have their support needs assessed and will receive an integrated package of support in order to maintain and/or improve their physical and mental health. Principle 3 - Carers will be empowered to make choices about their caring role and access appropriate services and support for them and the person they look after. Principle 4 – The staff of partners to this agreement will be aware of the needs of Carers and of their value to our communities. Principle 5 - Carers will be supported by information sharing between health, social care, Carer support organisations and other partners to this agreement. Principle 6 - Carers will be respected and listened to as expert care partners, and will be actively involved in care planning, shared decision making and reviewing services. Principle 7 - The support needs of Carers who are more vulnerable or at key transition points will be identified early. See: https://www.england.nhs.uk/wp-content/uploads/2016/05/identifying-assessing-carer-hlth-wellbeing.pdf

6. Carer feedback – key themes Jane Thomas took us through what Carers has asked for as part of the engagement exercise last year – this helped us get to grips with the progress we are making and what we still have left to do. Now it is all about making it happen in practice. Carers said… • We recognise there is a need to do more around prevention and self-care • We offer you expertise – recognise, value, and listen to us • In our caring role we need access to condition information; professional knowledge for advice and crisis support; good quality training courses • We need the expert care partner role to be enabled and empowered – through relationship, support and processes • We need access to that which helps us look after our own health and well-being @SocialEnt_UK @IVAR_UK #BHPselfcare #BHPselfcare

7. Creating a different conversation (1) We asked participants to have a discussion about the realities, the benefits and the challenges around Think Carer. We asked them to consider ideas for new ways of working. The following summarises key points from the discussion: • Information sharing – this is not just a problem for Carers, but also for professionals working with carers. Schools were highlighted as an example of organisations not wanting to share information about how many young carers they have. • Confidentiality – take a common sense approach to parent-carers or carers who care from a distance which avoids exclusion and seeks clarity on who is making decisions about what, for that cared for person; for example, ‘organisations can use confidentiality to exclude parents of people with learning disabilities.’ One participant did report that a key message to safeguarding was: ‘don’t underestimate parent-carers – they may not be there all the time, but they are guiding [their child] and staff are taking risks by NOT consulting’. • Transitions – particularly for young people moving to adult services: ‘CAMHS dropped me just before I was 18… and then you’re added to the bottom of the list’. There was also conversation about tackling the culture of passing on responsibility

8. Creating a different conversation (2) • ‘Permission to listen’ - take time to listen and build relationships this will save time in the long run - staff need permission to listen,perhaps add to checklists: ‘I have spoken to the family.’ ‘Invest to save’. Show respect to Carers. Staff can also be fearful of data protection – needs demystifying. • Interpersonal skills - Don’t assume staff know how to have difficult conversations with Carers – don’t underestimate the ‘emotional labour’ involved and make time to ‘debrief’ or ‘download’ with staff • Respect – for Carers and their role as family representatives and people that know the person being cared for best, in particular in a hospital setting where questions can be deemed ‘interfering’. Staff talking the Carer/family through what they are doing and why would go a long way with helping Carers understand what is happening creating a less anxious environment • Fear – much of the above is created by the fear of getting things wrong and not following procedures. There needs to be an improved way of ‘teaching’ or learning about caring for people that includes a human approach and where the conversation with Carers is seen to add value

9. ‘Must knows & dos ’ for carers We asked participants to work with carers to pin down some of the important ‘things’ people working in the NHS & Social Care should be doing to support carers. • Ask the Carer how they are – this will make a difference to the whole family, building relationships, building trust • Listen, learn, involve and engage – ‘carers have valuable information that will help you do your job’, ‘what could you design together’. • Arm yourself with at least one good signpost/opportunity e.g. district nurse • Don’t just pass people on! (we need to look at Swedish example of where professionals are not allowed to pass people on until they’ve tried everything in their power). • Put people at ease, and they will share information • Being fearful or over cautious in terms of confidentiality and information sharing may actually put the patient at risk • Use central communications mechanisms – e.g. handover book – to pass on information • If you can’t have ‘the conversation’, be prepared to find someone who can, e.g. Care Navigator, Social Prescriber, Community Connector – someone with local knowledge • Make contact numbers available if you are an organisation – don’t just direct people to your website! • Build awareness and confidence of students in nursing and social work training/education • Make Every Contact Count (MECC) – Carers to be included in this approach • Effect on Carers lives – take time to consider what that is • Training being done by Active Impact and NAS Herefordshire – check for added info, refer carers to each of their sessions https://www.nas-herefordshire.com/ • Use stories to effect change

10. Overcoming confidentiality & barriers to sharing information Participants were asked to comment on these resources designed to help carers communicate with health and social care staff. For more information contact sarah.taylor-robinson@nhs.net

11. Actions/what next • Cross check MoU against local council’s strategy around carers • Start using #ThinkCarerHW - @IVAR_UK to amplify messages • Pan-system leaflet on confidentiality for Carers and staff • Capture a case study of a young carers experience of transition from CAMHS to adult mental health services • Consider how progress is being made across the STP – both in Herefordshire and Worcestershire • Embedding Triangle of Care standards across both counties (based on where they are now) Next meeting 6th March 2018 (10-2)

12. BHP Programme Update ‘Keeping well in communities’ - Exploring ways to utilise social prescribing and asset based approaches. ‘What makes us feel good – our health in our hands’ - Exploring how volunteer/community-led groups demonstrate benefit, measure impact and communicate value. ‘Building & Connecting Communities’ - Partnership improvement, scaling up learning/new ways of working. ‘Think Carer’ - Training and workforce standards for both Carers and practitioners across the STP area ‘Good life in old age’ – Exploring approaches with VCSE & citizens to co-design pilots on social prescribing, self-care, long-term conditions and mental health to support health and wellbeing in old age. ‘Social Prescribing and Care Closer to Home’ - Using emerging Care and Health Integrated Networks (CHINs) framework, and existing social prescribing initiatives, to ‘reimagine’ the role of all players in self-care at a system-wide level. ‘Breathing well – pathways for respiratory health’, Mid and South Essex: Self-care in the respiratory care pathway, working with carers, people living with respiratory problems. ‘Pathway to engagement & co-production – mental health crisis care’, Looking at ‘peer support’ to promote whole system change, community development, social prescribing, co design, prevention, digital solutions and workforce support and development.