NHS Carer Information Strategies
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NHS Carer Information Strategies – Learning and sharing event 1 February 2010 Report summary Aim and format of the event The aim of the event was to allow NHS Boards and their partners to share learning and practice resulting from the development and implementation of the NHS Carer Information Strategies. The event consisted of presentations from five NHS Boards – NHS Lanarkshire, NHS Borders, NHS Tayside, NHS Lothian, NHS Highland and from The Moffat Project - on work they are undertaking via the Carer Information Strategy, with the opportunity to discuss and reflect on this work through small group discussions. All the presentations given at the event can be found http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 at Welcome and introduction Moira Oliphant, Carers’ Policy Branch, Scottish Government welcomed everyone to the event and gave an overview of the background to and implementation of the NHS Carer Information Strategies. The key points of this presentation are detailed on pages 4-6. The Carers and Young Carers Strategy Gordon Paterson, Carers’ Policy Branch, Scottish Government gave an overview of the aims and development of the Carers and Young Carers Strategy. The key points of this presentation are detailed on pages 6-9. NHS Lanarkshire – Opportunities and Challenges Robert Peat, Linda Craig and Elizabeth MacDonald from NHS gave an overview of the approach taken by NHS Lanarkshire and to the Carer Information Strategy, and the work that is being through the strategy. The key points of this presentation are pages 9-13. Lanarkshire its partners undertaken detailed on NHS Borders – PRTC work with GP practices Stephen Bermingham and Jack Ingle gave an overview of the work being undertaken in the Borders with GP practices in partnership with the Princess Royal Trust Carers Centre. The key points of this presentation are detailed on pages 13-15. NHS Tayside – Partnership with Barnardo’s Allyson Angus and Najima Umar gave an overview of the work being done in partnership with Barnardo’s Scotland with young carers. The key points of this presentation are detailed on pages 15-16. 1 NHS Carer Information Strategies – Learning and sharing event 2 February 2010 Question and answer session – morning Time was provided for questions around the issues raised during the morning presentations. The questions focused on: - Resourcing of the Carers and Young Carers Strategy and whether there would be ring-fenced funding The barriers to identifying young carers and carers of people with mental health issues The need to support young carers and also ensure that they are not supported to carry out inappropriate care The key points raised during this session are detailed on pages 17-19. NHS Lothian – Carer Awareness and E-learning Margaret Callander and Gordon Dodds gave an overview of the successful partnership working involved in the development of both NHS Lothian’s Carer Information Strategy and the NHS staff e.learning modules on carers. The key points of this presentation are detailed on pages 19-21. NHS Highland – Integrating Young Carers Support Theresa James and Frances Nixseaman gave an overview of how support for young carers is being integrated into policy and practice. The key points of this presentation are detailed on pages 21-23. The Moffat Project – Preventing Crisis for Carers Sheena MacKinnon, Moffat Project Co-ordinator, The Princess Royal Trust for Carers, gave an overview of the work which has been undertaken via the Moffat Project in four NHS Board areas. The key points of this presentation are detailed on pages 23-25. Question and answer session – afternoon Time was provided for questions around the issues raised during the afternoon presentations. The questions focused on: - The use of e.learning modules as part of NHS staff training on carer awareness and carer issues Young carers as children first The resourcing of services for people with dementia and their carers The key points raised during this session are detailed on pages 25-27. Small group discussions Those in attendance divided into four groups and were asked to discuss what’s working well in different areas - to learn and share. From this discussion the groups were asked to identify the key points and main themes, positive and negative to feedback. The key points from each group 2 NHS Carer Information Strategies – Learning and sharing event 3 February 2010 are summarized on pages 27-29 and the full notes from the small group discussions can be found in Appendix 1 (pages 30-32). Summing up the key points The following messages emerged from the presentation and discussions: - There is a huge amount of work and personal commitment to support carers and young carers across the statutory and voluntary sectors. However much remains to be done. - There is a keen interest from Shona Robison, Minister for Public Health and Sport in monitoring how the implementation of NHS Carer Information Strategies progresses. - The best results are achieved when carers are directly involved, where communication and roles and responsibilities are clear and where there is good planning - Much good practice already exists which can be shared eg. work with GP practices, initiatives within the acute sector, support to young carers and e.learning modules. Details of this work can be found throughout this report. - Clear outcomes for carers are key in sustaining carers in their caring role. Where these outcomes are embedded in practice there are real gains for carers such as improving health and wellbeing. - In terms of sustainability there was a recognition that good practice needs to be sustained as we do not want to raise carer expectations and then not meet them. The Scottish Government will be considering how the NHS Boards can embed good practice so that it can be continued beyond 2011. - There is a need to look beyond the issues presented by a carer and young carer to find out more about the issues facing them. - The statistics on the identification of young carers show a lack of awareness of young carers. - Adult carers are key partners in care but for young carers it is about minimizing the impact of the caring role and ensuring that they are children or young people first and foremost. There may be merit in holding another event later in the year to look at the final year of CIS plans and also at the Carers and Young Carers Strategy. 3 NHS Carer Information Strategies – Learning and sharing event 4 February 2010 1 Welcome and introduction Moira Oliphant, Carers’ Policy Branch, Scottish Government welcomed everyone to the event and introduced Gordon Paterson, her colleague in the Carers’ Policy Branch. She also welcomed Gavin Parry from the Welsh Assembly Government who is leading on the development of a carers’ strategy for Wales. Moira Oliphant then set the scene for the day’s discussions as follows. The full presentation and all the presentations given on the day can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 1.1 The Carers and Young Carers Strategy This strategy is currently under development and is due to be published in the first half of 2010. It is being developed in partnership with COSLA as part of the concordat relationship. NHS Boards are also vital contributors to the strategy and are represented in the development process. There are two Steering Groups – the Carers’ Strategy Steering Group and the Young Carers Steering Group. There is wide representation on these groups including the National Carer Organisations, Alzheimers’ Scotland, Children 1st, Barnardo’s Scotland, and the Association of Directors of Social Work. There is also the Carers Reference Group with ten carers attending from all over Scotland who are looking at the emerging issues and will be feeding back on the proposals in the strategy as they develop. There are four events being organized in partnership with the Coalition of Carers in Scotland (COCIS) as part of the process of engaging people in the development of the strategy. These events are being held in Inverness, Dundee, Glasgow and Melrose during February and March. Also as part of the process of engagement Moira Oliphant and Gordon Paterson have been attending a variety of local events. Finally information has been and will continue to be on the Scottish Government website at http://www.scotland.gov.uk/Topics/Health/care/Strategy 1.2 Carer Information Strategy (CIS) Overview There is a legal requirement on NHS Boards to prepare and submit an NHS Carer Information Strategy to Ministers. All NHS Boards submitted their strategies. These strategies must meet minimum requirements which are laid out clearly in the guidance notes to NHS Boards. A key requirement is the need to engage with stakeholders in developing the strategy. The submissions have been very comprehensive. There has been an investment by Scottish Government of £9 million to Health Boards and the Scottish Ambulance Service over three years. The Scottish 4 NHS Carer Information Strategies – Learning and sharing event 5 February 2010 Government expects to see progress and real outcomes for carers as a result of this investment. 1.3 1.4 Minimum requirements The minimum requirements for the Carer Information Strategies are, with one example shown in brackets: General (including arrangements for involving carers and young carers) Content (including information on carers need) Delivery in NHS Operating Systems (including information to carers by GPs and hospital staff) NHS Staff Training Training for carers Accountability (lead officer) Monitoring (baseline information/outcomes/indicators) Policy context (best practice recommendation) General principles (best practice recommendation – including equality and diversity) Action Plans The following format was given as an example of an action plan template used by one NHS Board. The Scottish Government Carers Policy Branch may ask other Boards to adopt the same approach when reporting on their Carer Information Strategy Action Plans. Theme: How carers are informed and empowered Aim: Carers who need information and support should receive it What we plan to do: Appoint an NHS Carer Support Team to support NHS staff How this will be measured: Monthly progress reports/follow-up phone calls with carers following patient discharge What we have achieved to date: Five team members appointed/induction etc What difference have we made: Eg, GPs and staff have better understanding of role of unpaid carers/carers signposted to services Outcomes: Better informed/peace of mind/partners in care/personalised support/improved health and well-being 5 NHS Carer Information Strategies – Learning and sharing event 6 February 2010 1.5 Future actions In the coming months the Carers Policy Branch plan to: Write to all NHS CIS leads giving feedback on their 2008-09 annual update Write to all NHS CIS leads about the plans for 2009-10 expenditure and 2010-11 plans Provide strong encouragement to NHS Boards to put their approved plans on their websites together with their annual updates, when they are available Reinforce that the expectation is that the resources - £9 million – will be spent on carers’ issues. The resourcing is currently until 2011. Consideration will be given to how the resourcing by NHS Boards might continue beyond 2011 to embed good practice. Provide a full write-up of today’s event, and this report will be sent to CIS leads, with a copy to Chief Executives. The report will also be posted on the Scottish Government website. There is also a keen interest from the Minister in today’s event. 1.6 Aim and format of the event It is hoped this will be the first event to allow NHS Boards and their partners to share learning and practice. The event will consist of presentations from five NHS Boards – NHS Lanarkshire, NHS Borders, NHS Tayside, NHS Lothian, NHS Highland and The Moffat Project - on work they are undertaking via the Carer Information Strategy, together with an opportunity to discuss and reflect on this work through small group discussions. 1.7 Contact details Moira Oliphant Primary and Community Care Community Care Division Policy for Unpaid Carers St Andrew’s House Edinburgh EH1 3DG Tel: 0131 244 3503 Carers.Strategy@scotland.gsi.gov.uk Moira.oliphant@scotland.gsi.gov.uk 2 The Carers and Young Carers Strategy Gordon Paterson, Carers’ Policy Branch, Scottish Government introduced himself and his work at the Carers’ Policy Branch. He is a Social Work Manager who has been seconded from a local authority to work on the 6 NHS Carer Information Strategies – Learning and sharing event 7 February 2010 development of the Carers and Young Carers Strategy. The aim is to have the draft strategy published in May/June of this year. 2.1 2.2 2.3 Aim of the Carers and Young Carers Strategy The aim of the strategy is to improve outcomes for unpaid carers and young carers in Scotland, recognizing the specific needs of different groups of carers. This will be achieved through: - Identification of carers - raising the profile of carers and their needs - recognizing and valuing the contribution of carers – it is estimated that unpaid carers provide £8 billion worth of care provided each year. This needs to be picked up by other strategies as well as this strategy as the contribution that carers make is critical to the policy delivery of health and social care for example preventing hospital admission. Work is ongoing by the Carers Policy Branch to ensure that carers are embedded in other policies such as ‘Reshaping care for older people’ and ‘Shifting the balance of care’ - addressing the need of carers for support including advocacy, training and information Partnership groups The strategy is being taken forward: In partnership with COSLA Via the Carers Strategy Steering Group Via Young Carers Steering Group Via sub-groups on young carers’ employment/workforce/personalisation) services/transitions/ Part of the wider agenda The strategy has to be part of and link to other key agendas, these include: Reshaping care for older people – this is key agenda looking at how to shape services and care to meet the changing demographics. This will be out for consultation in the coming weeks. Shifting the balance of care – a key message from carers is do not shift the balance of care on to them. This agenda must take cognisance of the role and contribution of carers and ensure that as resources are shifted carers are not under a greater burden because of developing government policy. Quality strategy – this strategy aims to provide a vision of a first class health service for Scotland. 7 NHS Carer Information Strategies – Learning and sharing event 8 February 2010 2.4 2.5 Dementia strategy – an important development for people with dementia and their carers. Getting it Right for Every Child (GIRFEC) – this is a key agenda for young carers. The aim for young carers is to remove the burden of inappropriate caring responsibilities so that they can be children first and foremost Additional support for learning – which helps in making connections into schools so that young carers can be supported The priorities for the Carers and Young Carers Strategy The key priorities for the Carers and Young Carers Strategy are: Carer identification by GPs, Social Workers, teachers Assessment of the contribution made by the carer, their health, how they are coping with the caring role and also looking at other aspects of their life Providing the carer with information on issues such as the cared for person’s condition, the services and support available to them as a carer Providing training for the carer on topics including the cared for person’s condition, moving/handling, dealing with the stress of caring Maintaining the carers’ health, this includes their physical, emotional and mental health Providing the carer with support around finance, allowing the carer to maintain the appropriate heating, housing, diet and have a quality of life Providing the carer with support around employment so that they can have a life outside of their caring role which provides them with a separate identity and also an income Providing appropriate support to the carer including counselling, breaks, telecare, advocacy The content of the Carers and Young Carers Strategy The strategy will contain all of the following elements: The case for action Vision Outcomes Carer and young carer identification Support for carers and young carers – the different types of support which work for carers and young carers Short, medium and longer term priorities – this is in recognition that economic climate can change and the strategy therefore needs to be kept under review 8 NHS Carer Information Strategies – Learning and sharing event 9 February 2010 2.6 3 Showcase and embed good practice – a key message from Young Carers Festival is that to make a difference you do not always need new resources but it can be done within existing resources. Young carers and carers’ stories will also feature in the strategy. Implementation, monitoring and evaluation – this will include the need to engage agencies widely in this process. The aim is to show what works for carers and why it works. Contact details Gordon Paterson Primary and Community Care Division Policy for Unpaid Carers St Andrew’s House Edinburgh EH1 3DG Tel: 0131 244 0109 Carers.Strategy@scotland.gsi.gov.uk NHS Lanarkshire – Opportunities and Challenges Robert Peat, Linda Craig and Elizabeth MacDonald from NHS Lanarkshire gave an overview of the approach taken by NHS Lanarkshire and its partners to the Carer Information Strategy, and the work that is being undertaken through the strategy. The full presentations can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 3.1 Robert Peat, Head of Planning, NHS Lanarkshire The key points from Robert Peat’s presentation are summarized below: Carers are key partners and are the third unpaid resource in delivering health and social care, without them we would not cope. Carers need to be supported to care. In implementing the Carer Information Strategy NHS Lanarkshire has been part of a partnership approach, which has included North and South Lanarkshire Councils, Princess Royal Trust for Carers Centres, North Lanarkshire Carers Together, South Lanarkshire Carers Network, and representatives from the acute and community sectors The Carer Information Strategy and Action Plan have been developed through the Carer Information Strategy (CIS) Group which is inclusive of all partners. The CIS Action Plan is updated each year to ensure that it is flexible and takes changes into account. It is also monitored on a monthly basis. This allows evidence to be reviewed to assess what is and is not working. 9 NHS Carer Information Strategies – Learning and sharing event February 2010 3.2 There are strong links between the CIS Group and other carers’ strategy groups to ensure that actions are linked and work is taken forward via partnership working. There is a funding sub group of the main CIS Group with a transparent application process underpinned by a standard application pack and process. The application process requests detailed information on the work planned, including clear outcomes and an exit strategy. The Carer Support Team is embedded across North Lanarkshire Carers Together and South Lanarkshire Carers Network, and the three hospitals in Lanarkshire. Linda Craig, Primary Care Co-ordinator, NHS Lanarkshire The key points from Linda Craig’s presentation are summarized below: The post of Primary Care Co-ordinator is based in South Lanarkshire Carers Network. This post is funded by CIS monies and is part of a team of seven. The aim of the Carer Support Team is to work within acute and primary care to liaise with key personnel in relation to carers. As Primary Care Co-ordinator, Linda Craig works with the fiftyfive GP practices across South Lanarkshire to identify and develop good practice in relation to carers. The aim is to identify and develop support for carers at all stages within primary care to ensure carers are supported throughout their contact with these services. The starting point for this work has been to develop links with the Community Health Partnership (CHP) and then to link also to the locality management. The work and initiatives undertaken by the Primary Care Coordinator include: - The development of a carer health needs database, a database of carer issues is also in development - The development of carer registers within GP practices. This is a significant part of the role played by Linda Craig. She spends a couple of hours in each practice each month to identify hidden carers - Making effective use of notice boards in GP practices. To date 45 of the 55 South Lanarkshire GP practices have a dedicated carer information board which is monitored by Linda Craig on a monthly basis. - Staff training within the GP practices to raise awareness of carers, their needs and issues and how the practice can support and signpost them. 10 10 NHS Carer Information Strategies – Learning and sharing event February 2010 - A carer support team event in Hamilton which raised the profile and awareness of the team. The support offered to carers directly by the Primary Care Coordinator has included signposting carers to a carer assessment. Last year 58 carers were identified for assessment. Work has also been done within addiction services to raise awareness of the needs of carers and young carers. This includes representation at the Partnership Board for Addictions, and providing awareness raising and training sessions to the community addictions teams. In terms of equality and diversity additional funding has also been secured for a BBV (Blood Borne Virus) Support Worker to provide bilingual support (English and Urdu) for carers affected by BBV, of which there is a high prevalence in South Asian communities. The main remit of the post of BBV support worker is to engage with BME communities providing one to one support, information and group work. There is also a full time BME carer support worker who has been in post since August 2009, and is bilingual in Punjabi and English. 3.3 Elizabeth MacDonald, Co-ordinator for Carers, Acute Sector, NHS Lanarkshire The key points from Elizabeth MacDonald’s presentation are summarized below: There is one co-ordinator for each hospital in the area – Hairmyres, Monklands and Wishaw General Hospitals. The focus for the three posts is on carers as key partners and trying to ensure that the journey through the hospital is a two person journey which involves the carer at all stages. The work and initiatives undertaken by the co-ordinators have included: - Adapting the admission form to ensure that it includes a carer information section. The team is undertaking a 6 month review of hospital case notes to see how effectively this is filled out. - Ensuring that they are networked into all wards and departments. This has included establishing how aware staff are of carers as partners and where there are gaps putting together a carer awareness raising plan for staff. - Looking at effective communication skills for staff so that they can engage with the carer, as the better the communication the better the journey and the outcome for the carer. - Promoting the need to be supportive of the carer and provide information to the carer. This includes the distribution of the ‘Home from Hospital’ information pack. - Giving staff information to help them to identify hidden carers. 11 11 NHS Carer Information Strategies – Learning and sharing event February 2010 - Providing the ‘Home from Hospital’ information pack which includes information on what to expect while in hospital but also offers crucial information on community contacts. This is being monitored for effectiveness through 6 month follow up calls. - Reviewing hospital admission and discharge procedures to ensure carers’ needs are addressed. - Close liaison with discharge teams, attending multidisciplinary meetings in wards, supporting carers at hospital case conferences. - Having a robust referral system which includes service information cards and referral forms, and carer information boards at entrance to all three hospitals. The role of the Co-ordinator for Carers includes: - Assessing and meeting the individual needs of family, friends and carers while the patient is in hospital. - Involving family, friends and carers in planning patient care and discharge. - Explaining the role of the staff involved in the care process. - Ensuring family, friends and carers have the necessary skills before discharge through education and training. - Doing follow up call to home following discharge. - Highlighting community. To date (April 09 to Dec 09) 647 referrals have been received, with 330 carers referred to carers support agencies, 14 referrals have also been made to Primary Care (GPs), 30 to Social Work, 58 to the Pension Service and others to voluntary sector agencies eg. Alzheimers’ Scotland, Maggies Centre, The Haven. To date 448 follow up phone calls have been made to see what has happened and what difference it has made for the carer as a result of the support provided eg. carers’ assessment, access to services, benefits, are they on the carer register at GP practice, also feedback on the ‘Home from Hospital’ pack and on the discharge planning process. The co-ordinators were also involved in the Carer Support Team Information Event, which resulted in 25 referrals and 497 enquiries. It is hoped this event will be repeated next year. Future goals for the co-ordinators include: - A review of education and training for professionals in the acute setting to see how carer awareness can be integrated. - Exploring ways of improving identification of young carers in the acute setting as currently referral levels are low. and signposting carer organisations in the 12 12 NHS Carer Information Strategies – Learning and sharing event February 2010 3.4 Looking at how to improve carer information within admission forms. Contact details Hairmyres Hospital - Elaine Harrow 01355 585522 Monklands District General Hospital - Lesley Callan 01236 712566 Wishaw General Hospital - Elizabeth MacDonald 01698 366118 North Lanarkshire Carers Together - Marion McParland, Agnes Hadden, Pauline McIntosh 01698 404055 South Lanarkshire Carers Network- Linda Craig 01698 285163 4 NHS Borders – PRTC work with GP practices Stephen Bermingham and Jack Ingle gave an overview of the work being undertaken in the Borders with GP practices in partnership with the Princess Royal Trust Carers Centre. The full presentations can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 4.1 Stephen Bermingham, Public Involvement and Communication Manager at NHS Borders and lead on carers The key points from Stephen Bermingham’s presentation are summarized below: It has been crucial to work in partnership with the voluntary sector, in particular the Carers Centre. NHS Borders would not be able to fulfill its statutory duties without the partnership with the voluntary sector. In developing NHS Borders Carers Information Strategy the aim was to build on the good work already done under the Joint Carers Strategy, and to further develop this work and support carers by making sure front line staff are aware of their needs and what support exists for them. The key issue has been to make NHS and Social Work staff more aware of carers’ issues and needs. One clear issue identified by a survey of Primary Care staff is that they were not very aware of the needs and issues for carers and particularly for young carers. This includes not having enough awareness of what carers need eg. respite. All but one GP practice in the Borders signed up for the Direct Enhanced Services (DES) for carers. This opened the door for training which the Carers Centre delivered. The training session was oversubscribed, and the highlight of the day was the panel of carers talking about their experiences. Those attending felt 13 13 NHS Carer Information Strategies – Learning and sharing event February 2010 that it was crucial to meaningfully involve carers as they have the expert knowledge. 4.2 Jack Ingle, GP Liaison Worker, The Princess Royal Trust Borders Carers Centre The key points from Jack Ingle’s presentation are summarized below: The aim is to work more proactively with GPs to help them to identify hidden carers. To assist this process a carer identification pack has been produced, this includes: - a flow chart on how to identify carers - information on the services the carers centre offers - carers consent form for referral - carers assessment of need pack Work has been undertaken with 24 of the 28 GP practices and this has included: - looking at carer identification practices such as asking people ‘Are you are carer?’ when they register with the practice and at first consultation - establishing carer notice boards - having carers as a standing item on practice team meeting agendas - using READ codes to mark carers’ medical records monitoring the support offered. As part of his role Jack Ingle liaises with the practices to encourage referrals. This includes emphasizing that anyone in the practice can make a referral. A key concern is that the majority of the referrals received are adult carers not young carers. These are young people who will not see themselves as carers but who may be caring for someone with a long term condition, or alcohol and drug addictions and who may also be caring for siblings. Work is ongoing to emphasize to GP practices the importance of identifying young carers to ensure referrals are made. The majority of referrals received for young carers come from Social Work and Guidance Services within Education. To date only two GP referrals for young carers have been received by the Carers Centre, however this should rise significantly based on the ongoing work. and 14 14 NHS Carer Information Strategies – Learning and sharing event February 2010 4.3 4.4 5 Stephen Bermingham, Public Involvement and Communication Manager at NHS Borders and lead on carers Stephen Bermingham concluded the presentation from the Borders by making the following points: The impact of the GP referral project is clear in the following figures. Referral from GPs to the Carers Centre - 2007: 9 - 2008: 95 - 2009: 195 Post training there was an upsurge in requests from GPs for Carer Information packs The key messages from NHS Borders include: – see slide for details - CIS funding has helped promote partnership working to support carers - Information is most effectively delivered through a combination of training, ongoing contact and support - Involving carers in raising awareness has a significant impact on health care professionals - Carers now receive a better service from GPs due to the working relationship with the Carers Centre - We need to build on the success of the CIS as carers expectations and GP referrals have increased. - A key message from carers is ensure that there is sufficient resource and infrastructure to continue this work Contact details stephen.bermingham@borders.scot.nhs.uk NHS Tayside – Partnership with Barnardos Allyson Angus and Najima Umar gave an overview of the work being done in partnership with Barnardo’s Scotland with young carers. The full presentations can be found at:http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 5.1 Allyson Angus, Public Involvement Manager, NHS Tayside The key points from Allyson Angus’ presentation are summarized below: It is crucial to go out and about to listen to people about how we can improve health services. When developing the Carer Information Strategy it was absolutely invaluable to go out and about to meet carers and 15 15 NHS Carer Information Strategies – Learning and sharing event February 2010 young carers and hear from them. One event was the Young Carers event where they met a young girl who was herself visually impaired but was a young carer. One young male carer has met and had a discussion with Nicola Sturgeon, Minister for Health and as a result there is a suggestion that it would be worth pursuing a place for a young carer on the NHS Board. Some of the funding made available via the Carer Information Strategy was given to Barnardo’s Family Support Team. 5.2 Najima Umar, Barnardo’s Family Support Team The key points from Najima Umar’s presentation summarized below: are The Barnardo’s Family Support Team were awarded three different grants from CIS monies. The Family Support Team provides community based support for families of any origin which include a child who has a significant learning disability, from the age of 0 to 19 years Grants were awarded for: - disability training for young carers. The target groups were young unpaid carers from socially deprived areas and young carers with additional support needs in Dundee. Training topics included child protection, 1st Aid training, explaining different disorders, safe caring, sexuality training, and workshops on nappy/pad changing. Young carers were looking for training that was interactive and fun. Some of the funding was used to buy interactive equipment eg. dolls that cry to help with nappy changing. It was also important to remove jargon and make material easy to understand. - The Future Matters event – the aim of this event was for young people 16 years of age with learning disabilities who would be leaving school and their families to come together to get information and discuss their views. It included information stalls, money matters workshop and individual appointments, art workshops, ‘money wall’ and ‘diary pod’. It also included a drama provided by ‘Future Matters Drama Group’ about what young people with learning disabilities want from the future. - The ‘Speakeasy’ partnership – Speakeasy and Barnardos worked in partnership to design and deliver an 8 week training course for young carers on sexual matters, relationships, contraception and keeping safe. An evaluation report is available. 5.3 Contact details allyson.angus@nhs.net najima.umar@barnardos.org.uk 16 16 NHS Carer Information Strategies – Learning and sharing event February 2010 6. Question and answer session The following is a summary of the questions raised and answered on the topics raised by the morning presentations: Pat Riley, Social Work Department, Dumfries and Galloway asked if the Carers’ Strategy money will be ring-fenced as Carer Information Strategy monies have at times been integrated in general funds. - Moira Oliphant replied that Carer Information Strategy monies were not formally ring-fenced but the Scottish Government is seeking clear feedback on how this money is spent. In relation to the Carers’ Strategy this is being developed in partnership with COSLA so it needs to be agreed with them. Moira also suggested that people can take up funding issues with their own local authority. Margaret Jackson, Centre Manager, PRTC Perth and Kinross Carers Centre asked how the contribution of carers is being taken into account? She wanted to know if there is something in the strategy about how support will be provided to carers via carers centres and the NHS? - Gordon Paterson replied that the strategy will clearly highlight the support that works for carers at the moment but it will not be delivered with a great amount of new resources. The Carers Policy Branch is working with colleagues around the Scottish Government to look at how resources are used to support carers eg. reshaping care for older people programme is addressing the issues arising from the changing demographics and is looking at how the current resources are used. This would include looking at initiatives that clearly work for carers and how these can be supported. The challenge is ensuring that carers are recognized as central to key strategies and that the resources are there to underpin this. There is a need to engage the hearts and minds of local authority leaders, COSLA is key to this. There is very strong ministerial commitment to looking at what resources can be used to support carers. - Moira Oliphant added that the strategy will have a 10 year duration and will set out short, medium and long term priorities. We might expect resources to be released during the lifetime of the strategy as the economic situation improves but innovative ways are needed in the short term. Brenda Emmerson, Carer, East Ayrshire asked if the notice boards referred to in the earlier presentations were Carer Scotland notice boards? 17 17 NHS Carer Information Strategies – Learning and sharing event February 2010 - Linda Craig replied that generally the notice boards used are standard notice boards but Carer Scotland boards are used in North Lanarkshire. Rosemary Nicholson, Glasgow Mental Health Worker asked if workers had experienced particular challenges in overcoming barriers in reaching carers of people with mental health problems? - Elizabeth MacDonald replied that two referrals for young carers had been received via mental health hospitals, and that there was work with all three hospitals in Lanarkshire ensuring that staff are aware of carers’ issues. - Robert Peat added that it was one of the gaps in the action plan and there is a proposal on the table now to develop support to carers of people with mental health issues via community services. - Alison Smith, North Lanarkshire Young Carers Project advised that they had recently received CIS funding aimed at tackling the huge issue of identifying young carers of people with mental health issues. The funding will be used to look at awareness raising training on mental health carer issues. The Project has recently done work in schools which has resulted in the number of young carer referrals increasing fivefold. It is anticipated that this will happen with the work planned using CIS funding. Marion McParland, North Lanarkshire Carers Together noted the disappointing level of referrals from GP practices for young carers and asked is the GP practice the best place to identify young carers? Are schools the better place? Is it about better links and communication? Should we be looking more at parts of the health service that young people actually access? - Jack Ingle replied that yes, looking at other access points was in part correct but GPs do still have an important part to play. He emphasized that it is often the parents who are presenting to the GP so it is important to advise GPs to look beyond the people sitting in front of them to consider if they have children who are young carers. Gavin Parry, Welsh Assembly Government asked if there is a tension between the need to support young carers and also ensure that they are not supported to carry out inappropriate care? - Najima Umar replied that the young people they involve are often not recognized as young carers when first referred to them, so they are unpaid carers but not on a full time basis. 18 18 NHS Carer Information Strategies – Learning and sharing event February 2010 - Alison Smith from North Lanarkshire Young Carers Project added that when looking at young carers it is vitally important to look at the age of the young carer and what the young person themselves feel comfortable with. It comes down to an appropriate assessment with the young carer and how they feel about their role, and it is a very different assessment for a young carer than for an adult carer. 7 NHS Lothian – Carer Awareness and E-learning Margaret Callander and Gordon Dodds gave an overview of the successful partnership working involved in the development of both NHS Lothian’s Carer Information Strategy and the NHS staff e.learning modules on carers. The full presentations can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 7.1 Margaret Callander, Assistant Programme Manager, NHS Lothian The key points from Margaret Callander’s presentation are summarized below: The key outcomes which NHS Lothian is seeking to achieve through the e.learning modules are: - to provide flexible, creative, pertinent learning to all NHS Lothian staff and independent contractors. Flexible in that it can be accessed in a variety of ways, pertinent in that it gives access to lots of information and resources, and creative in that it engages staff and encourages them to apply the learning - Learning to provide staff with the tools and support they need to identify carers in the lives of patients, offer support and information to carers, and understand the need for personcentred and outcome focused working - Learning through interactive carer journeys experiencing real peer and carer stories Module 1 – Understanding and supporting the carer – this module covers: - Who is a carer? - What is caring? - The caring role - The caring journey – emotional and physical demands, issues and feelings - The effects of caring and through To date 1,538 staff have completed this module as part of their induction training Module 2 – Working in partnership with carers – As a healthcare professional what can you do? – this module covers: 19 19 NHS Carer Information Strategies – Learning and sharing event February 2010 - Healthcare professionals responsibilities - Discharge from hospital – carers’ support, carers’ assessment, when and how to refer a carer - Alternative ways of working – person-centred outcomes working, changes to practice - Thinking about future practice in your workplace – what can you do for carers? working, To date 136 staff have completed this module as part of mandatory training for continuing development. 7.2 The next steps are to: - Monitor and evaluate carer modules - Roll-out further training across Lothian, including GPs and Community Pharmacists - Encourage Council plans to provide adapted e.learning modules to their Health and Social Care staff, based on the NHS module - Continue discussions with Further Education organisations regarding adapted modules on Nursing, and Health and Social Care courses. A demonstration of the learnProNHS carer modules was then provided. If people wish to be set up with guest log-ins to try out the modules then please contact Margaret Callander at NHS Lothian - Margaret.Callander@nhslothian.scot.nhs.uk. Gordon Dodds, Planning and Commissioning Officer (Carers), City of Edinburgh Council The key points from Gordon Dodds’ presentation are summarized below: A key part of strategic planning is taking national policy and applying, and implementing it locally. For carers the key national policies are: - HDL 22 (6) – which provided guidance on the minimum requirements for NHS Carer Information Strategies - Kerr Report – Building a Health Service Fit for the Future - Care 21 Report – extensive report based on feedback from carers with 22 recommendations with four national priorities – carers’ health, carer training, young carers and respite (short breaks) Locally these national policies have been translated into: - NHS Lothian’s Carer Information Strategy - Towards 2012 – Joint Carers Action Plan These are being implemented through the City of Edinburgh Council working in partnership through: 20 20 NHS Carer Information Strategies – Learning and sharing event February 2010 7.3 - Strategic Planning Group for Carers - Towards 2012 Implementation Group - Edinburgh CHP Carer Information Strategy Implementation Group - Carers Assessment Review Group - Carers’ partnerships and forums - City wide and local involvement It is very much about partnership working which engages and involves carers. Contact details Margaret.Callander@nhslothian.scot.nhs.uk. Gordon.Dodds@edinburgh.gov.uk 8 NHS Highland – Integrating Young Carers Support Theresa James and Frances Nixseaman gave an overview of how support for young carers is being integrated into policy and practice. The full presentation can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 8.1 8.2 Theresa James, Community Care Manager, NHS Highland The key points from Theresa James’ presentation are summarized below: Highland is a large geographical area with a sparse population which is challenging in relation to providing good information and communication, having staff trained and up to date. So in these difficult economic times partnership working is not just desirable but is essential. The aim of the work being done is to ensure that young carers are identified at whatever point they make contact with health and social care services, so that the door is open for them to seek support. NHS Highland is not comfortable with the level of identification of young carers at the moment and is working in partnership with other agencies to see how this can be changed. Frances Nixseaman, Strategy Connecting Young Carers The key points from summarized below Frances Development Nixseaman Officer, presentation are This post is funded by both the NHS and the Council to ensure that there is someone with a broad overview of and for young 21 21 NHS Carer Information Strategies – Learning and sharing event February 2010 carers. Part of developing this developing a strategic action plan. overview has involved In Highland there are an estimated 4,700 young carers, based in a large area with unequal access to transport. These young carers experience similar isolation as many other young carers but this is exacerbated by being based in a rural area. The rural environment creates other challenges in sustaining services such as the lower number of young carers over a larger geographical area and maintaining confidentiality in smaller communities. Taking an integrated approach has included addressing the needs of young carers in: - Getting it Right for Every Child – since this has been implemented in Highland the work with young carers has become easier. A key issue is identifying the young carer. - The Young Carers Strategy – this has now become a collective responsibility for children’s services. - The Integrated Children Services Plan - The Carer Information Strategy The aims of the Young Carers Strategy – For Highlands Young Carers 2’ are: - Enhance universal support to enable early intervention and an integrated service for families - Reduce the number of inappropriate caring roles taken on by young carers - Facilitate development of specialist provision to support those young carers who would benefit from this type of support The actions that can be taken include providing information and training, and improving identification and assessment. The support provided includes respite, one to one support, family support and peer support. The only way that a small project can make a difference is by working in partnership. One young carer described his experience of not being allowed to visit his mum in hospital despite being the main carer. A key issue in relation to young carers is that decisions can be taken about the cared for person which are not connected to the needs of the young carer. An example was given of a young carer who had taken on a short term caring role (2 weeks) which meant that she missed taking up her college place which has ongoing repercussions. None of the agencies involved had taken her needs into account in assessing the situation, resulting in very poor outcomes for her. 22 22 NHS Carer Information Strategies – Learning and sharing event February 2010 8.3 A short film was shown about the positive impact that having the right support can make for young carers with young carers talking about what is positive about being a young carer eg. meeting other young carers, being part of the young carers festival etc. Contact details FNixseaman@hccf.org.uk 9 The Moffat Project – Preventing Crisis for Carers Sheena MacKinnon, Moffat Project Co-ordinator, The Princess Royal Trust for Carers, gave an overview of the work which has been undertaken via the Moffat Project in four NHS Board areas. The key points from the presentation are summarized below. The full presentation can be found at http://www.scotland.gov.uk/Topics/Health/care/Strategy/Carer05 The main aim of the Moffat Programme is to promote early identification, intervention and support for carers, to prevent unnecessary crisis, this will ensure their proper support as key partners in the provision of care, and prevent an adverse effect on the carers’ own health and well-being. The four NHS Board areas covered by the Moffat pilots are: - NHS Ayrshire and Arran - NHS Borders - NHS Lothian - NHS Greater Glasgow and Clyde In Lothian and Greater Glasgow and Clyde the NHS Boards added to the Moffat funding to add value and underpin the partnership working. The areas chosen represented quite diverse communities and areas. The model promoted through the pilots was one where workers were hospital or community team based, with the aim that workers were embedded in these teams. The overall programme aims to ensure that: - Carers are identified at their first point of contact with services - Carers are advised of their right to and offered a carer’s assessment - Pressure on carers’ own health is reduced - Carers are consulted and actively involved in discharge planning processes at an early stage - Health and social care professionals are able to provide appropriate information and refer carers to local support services 23 23 NHS Carer Information Strategies – Learning and sharing event February 2010 The outcome sought from this is that learning will be embedded and become good practice within Health Boards and Local Authorities The Moffat programme is being evaluated by Glasgow Caledonian University. This has involved getting feedback in a number of ways – from carers, from practitioners via questionnaire and interviews. The aim of the evaluation is to look at the impact of the programme but also to look at how it fits into wider strategies and practice. Part of what the evaluation will also look at is to what extent staff have changed their practice as a result of the work undertaken via the programme. A baseline was captured before the programme started and based on the evidence collected to date the following impact can be reported: - 60% identified as carers during hospital admission, as opposed to 66% of respondents at baseline not being asked if they were a carer during admission - Key role played by Moffat workers - Over 2,100 carers identified in first 18 months Average age of carers identified is 71 years old, but ages ranged from 10-93 years old, 37% of these carers had been caring for 1-5 years and 13% for less than a year. A key aim is to reach carers early in their caring journey. In addition 29% of the carers identified were caring for 75+hours/week, with 55% caring for more than 36 hours/week. Moffat workers have been involved in promoting and facilitating carers’ assessments. For carers new to the caring role it can be too early for an assessment prior to hospital discharge, they may need time at home with the cared for person to understand what support is needed, for long term carers their caring role can change and assessments allow this to be addressed. 77% of carers have been informed about the right to a carers assessment. This has mostly been done by Moffat workers. Ways in which carers reported being involved in discharge planning included: - Communication between the carer and hospital staff - Review meeting - Support requirements identified/recorded - Support requirements arranged - Advised of care package - Training provided on how to care 24 24 NHS Carer Information Strategies – Learning and sharing event February 2010 9.1 10 People are being cared for at home with serious and long term conditions where previously they would have been cared for by trained staff with knowledge of the condition and practical skills to provide the right support. Carers are now often taking on this role and therefore they need to have access to the information and training which allows them to care effectively while also protecting their own health and wellbeing. Services provided by the Moffat workers includes: - Information - Emotional support – to talk about the impact of the caring role - Benefits/finance advice – the carers finances may have changed because they or the person they care for have had to give up work so access to benefits and financial advice can help practically and reduce stress - Practical support – advocacy, access to services, aids and adaptations - Access to training Other activities undertaken by the Moffat workers include: - Training for health and social care staff - Attendance at meetings to develop carer pathways, facilitate referrals and raise awareness of Moffat programme - Outreach sessions in hospitals and other carer awareness activities - Mentoring of staff for Carers’ Assessments – supporting staff with this process. Contact details Sheena MacKinnon – smackinnon@carers.org Question and answer session The following is a summary of the questions raised and answered on the topics raised by the afternoon presentations: - Ann Smith, NHS Grampian expressed her interest in using elearning modules as they are excellent, not only in terms of the information it presents but also in the way it is presented. At the moment she is planning to write similar modules for Grampian but she wanted to know if she could use material from the Lothian modules? Margaret Callander replied that yes, the material could be used in discussion with NHS Lothian and VOCAL. Margaret encouraged people to access the modules and look at the digital carer stories. 25 25 NHS Carer Information Strategies – Learning and sharing event February 2010 Brenda Emmerson, Carer, East Ayrshire noted that the statistics in the modules are based on the Census 2001 and are therefore outdated. - Moira Oliphant advised that the Scottish Household Survey 2008 estimated that the number of adult carers in Scotland is over 657,000. - Margaret Callander advised that it is the policy of NHS Lothian to use Census rather than Scottish Household Survey figures. Robert Peat, NHS Lanarkshire asked how NHS Lothian has managed the challenge of releasing front line staff to do the training? - Margaret Callander advised that staff do not come to the training but rather the training comes to the member of staff. As staff can complete the modules in NHS Lothian e.learning centres, at their place of work or at home, as the modules are accessed online. She advised that Module One is part of the induction programme for all staff. Currently 18% of the workforce have completed Module 1, 14% annual turnover of staff was acknowledged. With regard to Module Two staff can have time written into their diaries for mandatory training and managers will get reports about who has completed the training. - Sebastian Fischer, VOCAL emphasized that the e-learning modules are part of a bigger package of training. Currently there is a tendering process which will identify an agency to do face to face training with staff. This will target managers as well as front line staff. So the e.learning needs to be seen as part of a whole package. Marion McParland, North Lanarkshire Carers Together asked if young carers should also be seen as partners in care? - Gordon Dodds, City of Edinburgh Council, replied that adult carers are key partners in care but that for young carers it is about minimizing the impact of the caring role and ensuring that they are children first. A representative from South Lanarkshire Carers Network asked if, given the increasing number of people with dementia, the Scottish Government has identified funding for local authorities to support dementia patients? - Moira Oliphant replied that the Dementia Strategy is under development and we need to wait and see what resources are allocated to this when the strategy is published. - Margaret Callander advised that NHS Lothian has just received a grant to look at how to identify and support carers of people 26 26 NHS Carer Information Strategies – Learning and sharing event February 2010 with dementia and this work will be taken forward via the Dementia Centre based at Stirling University. 11 Small group discussions Those in attendance divided into four groups and were asked to discuss what’s working well in different areas - to learn and share! From this discussion the groups were asked to identify the key points and main themes, positive and negative to feedback. In particular the groups were asked to address the following questions: - What will I take from today to make a difference to carers? What should my organization do? What should others do? The following is a summary of the key points fed back by each group. The full notes taken by each group can be found in Appendix 1. 11.1 Group 1 Liked the carer information packs including the Home from Hospital information pack. There was discussion on how to use it, including distribution. E-learning modules were seen as excellent There was some controversy about how the CIS monies were spent and at times there has been a lack of transparency about the process. There should be good communication and transparency. 11.2 Group 2 Stressed the importance of carer engagement at all levels and the difference this can make to the delivery of services. Reinforced the need for partnership working – the example of the work with GP practices was given and the need to build on this work in the longer term. It was also agreed that working within the acute sector was crucial. The group had been very impressed by the work being done by NHS Lanarkshire and its partners. Support for carer groups both adult and young carers. 11.3 Group 3 The importance of the GP carer register – GPs are the gatekeepers and there was discussion of how to maintain this work with GPs without the Direct Enhanced Services contract to underpin the work, perhaps make the work mandatory. Continue to build carer awareness E-learning – a must for all Need for more events like this to share learning and practice 27 27 NHS Carer Information Strategies – Learning and sharing event February 2010 At the end of the funding the need to continue the services and mainstream funding – do not want to raise carer expectations and then not meet them. Moira Oliphant added that how best to take forward GP support for carers is under consideration. 11.4 Group 4 Carer centres development across Scotland has been a real life line for carers Importance of communication between acute and primary sector Importance of staff awareness and acknowledgement that this is improving Better information for staff and carers Designated support workers works well Importance of supporting young carers Concerns over sustainability and spread once the CIS monies end 12 Summing up Moira Oliphant thanked everyone for their presentations. From these presentations it is clear that there is a huge amount of work and personal commitment to support carers and young carers across the statutory and voluntary sectors. However much remains to be done. Amongst the clear issues emerging today are that: The best results are achieved: - when carers are involved - where communication and roles and responsibilities are clear - where there is good planning Clear outcomes for carers are key in sustaining carers in their caring role, where these outcomes are embedded in practice there are real gains for carers such as improving health and wellbeing. Sustainability – the Carers Policy Branch will be looking at what they can do to work with NHS Boards to ensure that good practice is embedded and continued beyond 2011. There is a need to dig beyond what is presented by a carer and young carer to find out more about what is going on. GP practices are key to this work. The statistics on the identification of young carers’ show a lack of awareness of young carers. 28 28 NHS Carer Information Strategies – Learning and sharing event February 2010 Finally Moira advised that the event had been useful and suggested that if people were agreeable then another event might be held later in the year, perhaps with a different format, to look at the final year of CIS plans and also at the Carers and Young Carers Strategy. 29 29 NHS Carer Information Strategies – Learning and sharing event February 2010 Appendix 1 These are the full notes from the small group discussions. Group 1 1. E-learning was good 2. General points – Group had discussion about how CIS funding was distributed through CHPs. There were then further discussions about how CIS budgets were spent. It was thought that communications need to be improved. There is a lot of good practice within NHS. Therefore as a top priority information and practice should be shared as much as possible. 3. Carers Information Packs and ‘Home from Hospital’ packs were thought to be a good idea but the following should be considered: Plan distribution Plan for personnel and telephone numbers changes Use replaceable inserts Laminate inserts Plan ahead for when funding ends Group 2 1. Carer engagement – participation makes a big difference. There was a time when this was done in a tokenistic way, which is no longer the case. 2. Partnership working is really important e.g. GP practice work. This is a long term process in primary care. There is a wish to build on this, using different methods. Hospital discharge work is good but needs to be built on. 3. Support from carers centres and young carers groups. Healthcare professionals often come and go whilst carers centres are constant. What is working well? Physical presence of workers in GP practice Training resources – linking in with existing training – ‘carer proofing’ Carers groups – face to face support for carers, follow up calls Glasgow – GP notice boards for carers (but not enough resources to keep up to date) North Lanarkshire – One to one carer clinic in GP practice is very useful 30 30 NHS Carer Information Strategies – Learning and sharing event February 2010 Activities for children, access to information. Support from carers centre important. Aberdeen Royal Infirmary - hospital workers are seconded to Carer Information Point and work with Carers Centre staff Close partnership working is extremely important but is there a need for ‘champions’? Important to feedback to carers and user groups Group were impressed by systematic approach from NHS Lanarkshire. It was noted that the Lanarkshire Carer Organisations were well established and had local authority and NHS support. It was acknowledged that this has taken some time to get to this point and work was still progressing. Crisis discharges were becoming less prevalent as issues were being picked up earlier but this was a slow process. Having a worker based with the discharge team was very effective and allowed for professional relationships to develop. It also raises awareness re: carers and increases the identification of carers. A suggestion was made in relation to identifying young carers by involving community pharmacies. This work has given an impetus to changing NHS professionals’ attitudes to carers’ issues. Group 3 1. GP carers register – this is working due to the enhanced services contract but the potential for further work may move away when enhanced contracts no longer apply. This would be a backward step and therefore should be made mandatory 2. Continue to build on carer awareness 3. E-learning – a must for all 4. More ‘sharing and learning ‘events 5. Carer services need to be funded from mainstream funding – carers expectations will have been raised What is working well? Different areas have good practice. This should be shared for benefit of carers. In some areas clinical staff are carrying out carer assessments. E-learning modules for staff More information now readily available to carers Negatives Trying to access NHS and community staff for carer awareness raising sessions 31 31 NHS Carer Information Strategies – Learning and sharing event February 2010 Group 4 What’s working well? 1. The development of carers centres. Partnership working is greatly improved between public sector partners and voluntary sector organisations. NHS staff awareness is improving with referral processes and signposting 2. Having designated carer support workers to refer to and for signposting works well 3. Important to have better information and training available for staff, patients and carers 4. Support for young carers is important There were concerns about spreading good practice and sustainability. 32 32
