Stakeholder Reference Group Event Focus on Unpaid Carers 22nd May 2012, Bronwydd Village Hall, Carmarthen Introduction – Mr Chris Davies, Chair, Stakeholder Reference Group Mr Chris Davies welcomed attendees, advising that this event had been informed by the SRG Business Meeting held on 2nd February 2012 where it was agreed to focus on a number of distinct areas underpinning the Health Board’s Clinical Services Strategy, with a view to measuring the progress made over the period of a year. The topic of today’s discussion would be on carers, and the speakers were given the opportunity to differentiate between unpaid and paid carers. Carers Strategies (Wales) Measure – Mr Peter Llewellyn, Assistant Director of Strategic Partnerships, Hywel Dda Health Board Mr Peter Llewellyn, provided a presentation on unpaid carers with the support of Mr Jonathan Rees, Carmarthenshire County Council, and Ms Vanessa Pells. Pembrokeshire County Council. Mr Llewellyn spoke positively in relation to unpaid carers, but remarked that the need to have a Measure in place suggested criticism of the NHS in dealing with this issue. Mr Llewellyn highlighted the imminence of National Carers Week and welcomed the opportunity to undertake something meaningful linked to this event. Mr Llewellyn also highlighted the requirement to develop a Consultation and Engagement Strategy for submission to Welsh Government by October 2012. Expectations from the Measure: Mr Jonathan Rees provided the official definition of a carer under the various Acts that support carers, and stated that there was a pressure to implement the Carers Measure particularly in Wales. He clarified that when talking about carers in health & social care, this does not include those who receive payment. Background: •

The Carers Strategies (Wales) Measure places a duty on a relevant authority or two or more relevant authorities (i.e. Health Board and Local Authority) to prepare and publish an

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Information and Consultation Strategy setting out how they will work together to provide appropriate information and advice to carers Local authorities have long had responsibility for meeting Carers needs e.g. to carry out carers needs assessments to determine suitability for support Research shows that for 4 out of 5 carers, their first point of contact with any statutory agency is with a community-based health service, especially within a primary care setting, either at a health centre, GP practice or at home. 2001 census identified 340,000 adult carers and 4,600 young carers in Wales.

The Welsh Government’s vision for Carers is to: •

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Facilitate early identification of carers by the organisation(s), thereby improving access for carers to the information and services that they need to help them to care, in order to protect their own mental and physical health. This needs to be undertaken across adult and children’s services. Ensure that carers receive earlier and more planned support, through local partnerships or joint commissioning involving the NHS, local authorities, the Third sector and the private sector. Create cultural change so that carers are empowered in the decision making processes around care management and at a strategic level in service planning and delivery.

Two levels of consultation were identified – consultation undertaken in a forum such as this, but more critically culture change – the way health care services work. Everyone should recognise the contribution unpaid carers are making, economically as well. The contribution in Wales from unpaid carers is estimated to be £7.7 billion per annum – equating in Carmarthenshire to half a million – which far exceeds NHS budget for Wales. Consultation is between the professional and those doing the caring. Need to ensure that carers’ issues are mainstreamed into the everyday working practices of NHS and other staff, to ensure that staff work with carers in effective partnership, both to support the carer but also to maximise patient/user care. Mr Llewellyn provided an update on the current progress in regard to funding and clarified that funds have been made available which will come through the Health Board but be a joint initiative shared with statutory agencies such as the Local Authority and the Voluntary Sector.

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The first allocation is to cover costs associated with training and awareness-raising amongst relevant staff to ensure that they are fully conversant with all aspects of the Measure. The second allocation of funding is to be paid on receipt in October 2012 if Welsh Government approve the Strategy. Hywel Dda has received £53K for the awareness raising element, and will receive the same sum on implementation of the Strategy, together with an additional £10k allocation for young carers issues. This funding should be on-going for 2-3 years with a view to assessing how it can be mainstreamed. The 2nd and 3rd years will be about service development. Outcomes Framework: •

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The Welsh Local Government Association have secured funding from Welsh Government to develop a Results Based Accountability (RBA) Outcomes Framework Aim is to develop a way of recording how the Measure is being implemented and its success Proposed indicators are: % of Carers identified, % of staff trained, % of carers that receive appropriate information etc

Consultation Events: •

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The Welsh Government has commissioned NLIAH who are working in partnership with the SSIA, WLGA, the Carers Alliance and the Carers LIN to develop an awareness raising campaign There will be a series of Webinars hosted by the SSIA, aimed at Chief Executives, Non Executive Members, Chairs and Directors of Nursing of each Health Board across Wales Aim of the events are to ensure that senior members of staff across the NHS in Wales are aware of their new legal duties

Young Carers: •

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Strategies should also make linkages with the work of Local Safeguarding Children’s Boards, so that Young Carers who appear to NHS staff to be vulnerable or at risk for any reason, are identified by NHS staff and the appropriate agencies brought together to assist as required. Strategies need to make links with local Education services Need for a specific chapter within the Strategy to focus on the information and consultation needs of Young Carers

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Child Protection training could provide a vehicle for addressing Young Carers’ issues

Key Points from the Measure 1: The overall objectives of the Strategy are to ensure that organisations work in partnership to ensure: • The identification of carers by staff and professionals at all levels within the NHS • The effective provision of relevant, up to date and targeted information to carers at every point of their journey through the NHS • Carers are informed of their legislative right to an independent assessment of their needs as a carer Key Points from the Measure 2: • •

The duties placed on organisations via this Measure do not replace those already in place for local authorities. This Guidance also reminds organisations that the Carers and Disabled Children Act 2000 provides for Local Health Boards to undertake carers needs assessments, and Local Authorities may wish to use the opportunity offered by this Act to make robust arrangements with their partner LHBs to carry out these assessments

Key Points from the Measure 3: •

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Information and Consultation Strategies for carers should sit alongside local carer strategies, which have been developed by local authorities Relevant authorities should engage with carers to ensure that they understand their level of knowledge of the condition of the individual being cared for Makes a best practice recommendation that with carers’ consent, organisations including GPs should request to see a copy of Carers Needs Assessments

Key Points from the Measure 4: •

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Mechanisms should be developed so front line staff can report back to senior staff to inform them about what they are learning from carers Organisations should ensure that the LHB Chief Executive and the Director of Social Services are invested with the responsibility of ensuring that all staff in that operational

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sphere are appropriately informed, trained and equipped to support carers Makes a best practice recommendation that organisations should have Carers Information Packs available to all carers and available on hospital wards, GP surgeries and for community health staff

Next Steps: •

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Organisations (HB & LA) are required to formally submit their Strategy to Welsh Ministers for approval by 31 October 2012. Ministers will respond to organisations to inform them of their approval or rejection within 8 weeks Strategies should: • be developed jointly with partners • cover a three year period and address all the minimum requirements set out within the Regulations and Guidance • align to existing planning and monitoring cycles, for example those in place for HSCWB Strategies and the ACRF for Social Services and align with the new partnership arrangements

Who’s who for Hywel Dda LHB, Local Authorities (LA): •

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Carer Leads now in place within Hywel Dda - Peter Llewellyn and Sarah Veck, Strategic Partnerships Directorate, Chris Martin, Chairman, is the Carers Champion at Board level Carer Leads in the Local Authorities are Heather West and Sue Darnbrook in Ceredigion County Council, Jonathan Rees and Bruce McLernon in Carmarthenshire County Council, Vanessa Pells and Lyn Hambidge in Pembrokeshire County Council Carer Leads in the Health Board County Teams have been identified. This is to be strengthened with additional Champions within service areas.

What’s next for Hywel Dda LHB, Ceredigion, Pembrokeshire & Carmarthenshire Local Authorities (LA)? •

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Jan/Feb: 3 County Carers Strategy Group Terms of Reference adapted to be the facilitating group for the Strategy submission by October Jan/Feb: Key workstreams and wider links to other service areas and activity to be coordinated, Carers Champions to be sought

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Feb/March: Pilot and report on an Carers Awareness elearning programme and presenting recommendations in support of initial training requirements from April March/April: Mapping and identifying existing activity that meets good practice across the 3 counties April: Feasibility and workshop for a collaborative reporting system between the 3 Local Authority’s and HB May: Establishment of a 3 County Carers Programme Board (Carers Champions and Director level)

What will happen next in Ceredigion? •

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May: Ceredigion Carers Multi Agency Reference Group will convene and Terms of Reference will include representing Hywel Dda best interests within the regional strategy May/July: A process to engage with Carers, Carers organisations, professionals in Health and Social Care will seek to gather views on ways to meet the Guidance requirements on Information, Advise and Consultation for and with Carers July-Sept: Consultation on the draft Strategy October: Submission of Strategy to Welsh Government Nov/Dec: Fingers crossed it is approved…then the work begins!

Links: •

Carers Measure Guidance Documents: http://wales.gov.uk/consultations/healthsocialcare/carers/?la ng=en&status=closed

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Web outline summary and future updates: www.ceredigion.gov.uk/carers http://www.wales.nhs.uk/sitesplus/862/page/57866

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Ceredigion contact: Heather West [email protected]

Chris Davies summarised the key themes, specifically information required for carers to support them in their role, highlighting the huge numbers of carers and underlined the importance of talking to carers as a group.

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Looking After Me (LAM) – Albert Austin, Expert Patient Programme Albert Austin, a Volunteer Tutor, presented Looking After Me (LAM), a free health and well-being education programme for patients. Background: A self management course for any adult with a chronic condition and for anyone with a caring role. Welsh Government took on this programme and hold a licence for their NHS delivery having piloted the first courses in 2003 which have since grown and encompass several types of courses including a 6 week self management course, free to any adult with long term health problems (EPP – Expert Patient Programme) as well as the LAM course. Lay tutors understand the problems faced by those with chronic conditions or with caring duties as to become a tutor they need to have experienced Either a chronic condition or a caring role themselves. EPP courses complement hospital classes which are disease-specific and clinically led, and try to show participants how they can manage their disease and live with it on a day to day basis. Clients are introduced to the symptom cycle – pain, tense muscles, stress and anxiety, frustrations, depression, shortness of breath and fatigue – a never ending path. Clients are then introduced to the self management tool box – 10 tools that actually do work including physical activity, medication compliance, understanding the emotions involved, better breathing, etc. In the “My Story” section of the course – clients introduce themselves and provide their background which can often lead to a few tears being shed due to the emotion involved. One lady on the course wrote as part of her feedback– “grateful for the opportunity to attend the course, now on week 5. In regard to its usefulness – a valuable experience to take time out to reflect on how I go about my caring business. All clients are in the same boat – 2.5 hours is the most I can be away at any one time. The course is well organised with timetables strictly adhered to. Although delivered to script, it is not boring as clients are asked to participate. Action Plans are not forgotten throughout, with an emphasis on positive thought and action. The offer of an on-line course and leaflet was highlighted – and invited a discussion following today’s event. In terms of evaluating the course, clients are asked beforehand what they expect and want from the course, and after the course they are

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asked what they learned from the course and the expectations and results are married together. Contact details for EPP - 01554 779507 Carers Stories – Anna Tee, Patient Experience Manager Anna Tee provided a presentation on patients stories, which creates an opportunity for a patient or carer to sit down and tell their story in their own words about their own experience, as health staff often make judgments about patient’s experience and need to hear from the patient’s viewpoint to balance this. All health staff want to do a good job, but often it is due to the system that things go wrong. It is not just about criticising staff when things going wrong, as often positives can come out of this and as much can be learned from these as negatives. Patient stories are not intended to be representative of the whole – they are individual’s experience but this does not make them less valid. One example was focused upon where an elderly patient’s story was taken, and also that of her carer (daughter) and the staff involved, and what the health service thought was a positive outcome was not positively felt by the family. A clip from the extract was played. Expert Panel convened for question and answer session: • • • • • • • •

Sarah Veck, Director of Strategic Partnerships, Hywel Dda Health Board Peter Llewellyn, Assistant Director, Strategic Partnerships, Hywel Dda Health Board Nicole van Schie, Pembrokeshire Association of Voluntary Services Vanessa Pells, Pembrokeshire County Council Jon Rees, Carmarthenshire County Council Anna Tee, Patient Experience Manager, Hywel Dda Health Board Albert Austin, Volunteer Tutor, Expert Patient Programme Jacquie Peters, Crossroads

Question & Answer Session:

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Q: How are carers identified when they come into contact with the health service – are they asked if they are carers and what happens to the information given? A: As part of rolling out the Investors in Carers Scheme – when carers present to GPs, they can be identified and referred on. Q: What type of information given? A: We encourage carers to attend Carers’ Forums but these can prove difficult to access – even events such as today can be difficult to attend as there can be last minute caring duties. Information packs are being considered, ensuring they match the required regulations. Q: Will the Measure lead to changes in processes within the NHS to support working carers – 1 in 8/10 are carers which equates to 10% of the workforce? A: The 2004 Carers Equal Opportunities Act, carried a duty to inform carers of their right to an assessment of their needs, Equalities Act is the same now as for those of disabled people. To support carers in the workplace requires carer-friendly support policies which the Health Board will implement to include flexible working hours, additional unpaid time off, access to phones for private calls if necessary. Will happen by the Health Board implementing carer-friendly policies. Q: Queried appointments which working parents cannot leave work to attend, may be 2 or 3 appointments in 1 week but on different days – how will the Measure address this? A: The Health Board’s follow up appointment processes are being reviewed as it is recognised they are not efficient. Many Out-Patient appointments aren’t even needed, most of the health services are 95 Monday to Friday, and this must change as part of the work ongoing in relation to the Clinical Services Strategy. Requires more of a call-centre approach where patients choose their time slot, etc. This is not necessarily the Measure driving the change but will serve to enhance it. It is likely that legislation will reinforce the changes ahead. There is already a system of partial booking for appointments in place, but patients often choose to stick with the appointments they are given as they are worried they may lose them. Also, Health Board HR staff are advising those undertaking Back to Work interviews to ask whether staff have caring issues that might lead to a pattern of sickness. Q: Training – is this for all NHS staff and how will its effectiveness be monitored? A: This will be a phased process, certain staff will be targeted for elearning – and will work with carers champions on wards before

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cascading through the organisation. This represents an ambitious plan as there are so many areas to cover. Q: Carers can often be left out of the loop and needs addressing? A: The Health Board will do all it can to address this. Whilst there may be privacy and individual issues to be balanced out, this needs to be understood properly, and where a carer is identified they should be involved in the clients care. Would be useful to know where this is happening and the Health Board can undertake spot checks. Q: A&E is one of the worst areas whereby carers have been left out? A: This issue is recognised and there is an acknowledged need to change the culture of staff to think about how their behaviour can be perceived more positively. Need to think about how we can help to address this for carers, have considered including in the Information Pack to carers a Carers/Patient Consent Form which just needs to be signed by the patient and carer if and where appropriate. Carer’s also do need to take action rather than complaining. There can be particular difficulties with Mental Health and dementia patients. Wards tend to be managed more by doctors and nurses as opposed to Consultants who do not necessarily have the time to get involved. Q: Is there a need for a box to be completed stating do you have a carer as opposed to a next of kin which may be different? A: The Health Board is currently looking at nursing documentation to establish where there is a carer involved. Carers do expect at visiting time to be able to talk to nurses and reference was made to a pilot undertaken where a Stroke Co-ordinator was available at Prince Philip Hospital at visiting times. The proof of measurable progress will be in 12 months time. Q: Is there much liaison between the Health Board and the Police when dealing with issues re: dementia or other problems in the home? A: There are links in place through the Community Safety Partnerships – working on anti-social behaviour and the impact it has on patients and carers. The police are part and parcel of a lot of the Health Board’s work. Q: Good that the Health Board is taking notice of what carers are saying but there needs to be a big improvement as personal experience of caring role is poor

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A: Operationally, a lot more to be done. Staff need to understand the importance of how/what they say to carers comes across in reality. On the Carers Course, they can be asked about the problems they have with the system and with personnel, and this can be fed back and signposted on. Q: What mechanisms are in place to ensure this Strategy is not seen in isolation – and not purely a tick box exercise? A: Chris Martin, the Health Board’s Chair and Carers Champion is very passionate in this regard. This is not merely a Strategy to follow, but the way we should be doing things in practice every day. All care pathways now have to have the involvement of patients, carers and Third Sector. This Strategy is closely aligned to a number of other Strategies e.g. Health, Social Care &Well-being Strategies. Crossroads Training has looked at basic skills for carers needs – including manual handling, medication, etc, and meeting other carers. Need to provide information that is relevant whilst not overloading, to give carers the basics to undertake their role. Q: Concern highlighted for medical staff because of uncertainty of Hywel Dda re-organisation but got to get on with the job and sooner re-organise the better? A: Acknowledge that other public sector organisations are also in a state of flux but there will not be a wholesale restructuring but more of a longer process of improving services and moving them closer to home. This will be done on a service by service basis. Q: Highlighted that this event has been such an eye-opener and the need to re-visit this in 12 months time to consider the impact of what we have been doing and the difference it has made? A: Areas of priority have been identified on which to focus the SRG’s action – and in 12 months time to hold a similar event to evaluate what has been achieved. Q: Will the training be mandatory on wards? A: E-learning will be mandatory for all new starters, and basic training will become mandatory. In summing up, it was clarified that this is an on-going interaction and not only for re-scrutiny in 12 months time. Chris Davies undertook to provide carers feed back, both positives and negatives from the event, to the Board in order that the Board is aware of the challenges ahead.

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Present: Chris Davies - Mid & West Wales Fire Service (Chair) Sarah Veck – Hywel Dda Health Board Peter Llewellyn- Hywel Dda Health Board Albert Austin – Expert Patients Programme Colin Sanders – Carers Representative, Ceredigion Angie Darlington - West Wales Action for Mental Health Joanne Silverthorne – Carmarthenshire Carers Service Nicole Van Schie – Pembrokeshire Association of Voluntary Paula Martin - Independent Sector representative Cllr. Ben Davies - Community & Town Council In Attendance: Alison Gittins - Hywel Dda Health Board Habiba Lewis - Hywel Dda Health Board Alan Thomas – ATAX South Wales Amanda Reid - Ceredigion Association of Voluntary Services Anna Tee – Hywel Dda Health Board Ashley Warlow – CHC Carol Hardwick - prism alcohol – Carmarthenshire Chris Clark - Department for Work and Pensions Chris O’Byrne - Chwarae Teg Clive Smith - Carers Forum/Alliance Denise Rees Allibon Expert Patient Programme Ellen Ryan - Stroke Association Gerald Newton - 50+ Autonomy Advocacy Project Eiriol Helen Williams – CHC Jacquie Peters - Cross Road Jane Tremeltt – CHC Janet Waymont – CHC Jon Rees - Carmarthenshire County Council Julie James - Hywel Dda Health Board Karen Butler - Age Concern Pembrokeshire Lydia Salerno - Pembrokeshire Mind Lynn Howells - Mental Health Carers Advocate Martin Morris - Crossroads Care Sir Gar Alison Harries - Crossroads Care Sir Gar Mo Singer - Crossroads Care Sir Gar Rebecca Rosenthal Rebecca Thomas - Age Cymru Sir Gar Roger Rastall - Pembrokeshire Mind Roger Gant – Crossroad Sam Dentten - CHC

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Sharon David - Carmarthenshire Carers Forum Dylan David - Carmarthenshire Carers Forum John Willey –WWAMH Steven Griffiths – Carers Forum Debbie Bence - Carmarthenshire Association of Voluntary Services Sheena Umanee - Cross Road Teresa Walters - Help4Carers' project Tony Wales – CHC Vanessa Pells - Pembrokeshire County Council Apologies Linda Williams- Hywel Dda Health Board Sharon David - Carmarthenshire Carers Forum David Wildman –Hywel Dda Health Board Huw Meredith - Dyfed-Powys Police Parry Davies – Ceredigion County Council Sian-Marie James –Hywel Dda Health Board Hazel Lloyd Lubran - Ceredigion Association of Voluntary Organisations Mandy Jones – Carmarthenshire Association of Voluntary Services Dr Lawrence Williams – Hywel Dda Health Board Ken Jones – Carmarthenshire Carers Chris Martin –Hywel Dda Health Board

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