Hillingdon Carers Strategy 2015-2020
I appreciated the time out for myself. The course has done more for me than even a holiday. It makes me happy and even gives my life a sparkle that I had lost.
Contents Part one: Introduction 3 Foreword 4 Mission statements 5 Introducing Hillingdon Carers 6 Who we are 6 What we do 7 How we consulted 10 Part two: Programmes 19 Finding hidden carers 12 Tackling carer loneliness and social isolation 15 Extending our range of services 19 Supporting you to manage your caring situations 23 Helping you to look after your own physical and mental health 27 Young carers 31 The carer s voice 35 Part three: Making it happen 39 Delivering the strategy 40 Measuring and recording progress 41 Current arrangements 41 Improving outcome and impact assessment 42 Acknowledgements 43
Our vision: We will be recognised as the gateway to a better life for all unpaid carers in Hillingdon
Part one: Introduction
Foreword As carers you make an enormous contribution to your communities through the provision of essential care and support for relatives, friends and neighbours. Your efforts in providing this care improves the quality of life of the people you care for and often goes unrecognised, even by yourselves. Whilst many of you find caring fulfilling and rewarding, we know that caring can bring many challenges and, for some, advice and support are critical. Hillingdon Carers vision is to be recognised as the gateway to a better life for all unpaid carers; we will strive to ensure that you understand the critical role that you play and can access the information, advice, training and support you need. For young carers our support will help them to have as normal a childhood and adolescence as possible. We will give these young people the skills and strategies to better manage their home lives, allow them to be young and have fun in a supportive and social environment. In order to develop our thinking and our plans for the next five years, we have talked to hundreds of you, asking you what you think is important and how you would like carer services to look in the future. This documents sets out what you told us and also what we are planning to do about it. It presents our vision of a society where carers are better-recognised, healthier and happier. We are aiming for excellence and we re determined to achieve it. Doreen West Chair of Trustees Sally Chandler Chief Executive On behalf of the Trustees, staff and the volunteers of Hillingdon Carers 4
Mission statements Your feedback and comments have led us to develop three clear mission statements that, in broad terms, give you a clear picture of what Hillingdon Carers wishes to achieve for the borough s carers over the next five years: We will work to ensure that carers are recognised and valued for the care and support that they provide and are acknowledged as expert care partners who are critical to the health and social care economy in Hillingdon. 1 2 Our support will be tailored to meet individual needs, enabling carers of whatever age to maintain a balance between their caring responsibilities and a life outside caring. We will create partnerships that ensure they can do that safe in the knowledge that the person they care for is well-supported and cared for. We will grow our range of services and extend their reach, both geographically and in terms of seven-day access. In addition we will improve and strengthen our partnershipworking and increase our range of collaborative projects. 3 5
Introducing Hillingdon Carers Introducing Hillingdon Carers 1 Who we are Our experienced staff team has over 100 years of experience working with carers in the diverse neighbourhoods of the London Borough of Hillingdon. We have an excellent reputation for quality support and advice and all our services have been developed in direct response to your lived experiences. Our organisation is a charitable company limited by guarantee, and has an emphasis on by carers for carers ; a large proportion of our trustees and staff are either current or former carers. We are a Network Partner of Carers Trust, a national organisation that brings together carer services from across the UK. 6
Introducing Mission statements Hillingdon Carers 2 What we do Our current range of services is extensive and has been developed according to what you have told us. We offer: Information and advice: A drop-in Advice Centre on Uxbridge High Street plus a borough-wide outreach programme Support from Carer Advisers for: Expert Welfare Benefit advice Help with form-filling Assistance in accessing Social Services support Advocacy and appeals Signposting and referral to other services A range of quality information through leaflets, website, Facebook, Twitter and LinkedIn Health and wellbeing: A GP outreach and health liaison service Health MOT and Pamper days A series of drop-in cafes across the borough Relaxation sessions, weekly exercise, yoga and dances Counselling and emotional support Training in back care, first aid and dementia awareness Arts for carers courses A therapeutic care service in partnership with the British Red Cross 7
Introducing Hillingdon Carers Young carers services (5-17 years): School/college liaison programme Specialist project supporting young carers looking after an adult with mental health or substance misuse problems 1:1 emotional support and support planning Young Carer Clubs across the borough School holiday events programme Residential breaks Arts projects, fun activities and family days Young adult carers (17-24 years): Support and advocacy for young adult carers through the transition from school to work, apprenticeships or further education Bespoke, 1:1 support and help to write a personal development plan A comprehensive programme of training to provide a range of life skills from money management to CV writing A social programme with trips, activities and residential trips Liaison and links to further education, apprenticeship schemes, local employers, training and volunteering opportunities. 8
Introducing Mission statements Hillingdon Carers A smile and a welcome lift the spirits. [Hillingdon Carers] is a place where I feel I won t be judged and I am with people who understand what problems I am facing; most people don t understand this. 9
Introducing Hillingdon Carers 3 How we consulted We have learnt over many years from our work with carers just what is important to you. We also carried out a consultation to help with the development of our plans. The consultation process included: A Help us to plan the future questionnaire Use of our existing services to talk informally to carers of all ages about what is important to you Meetings with councillors and public sector officers A review of our 6-monthly Carers Surveys An away day event with our Board of Trustees, staff team and volunteers Further half-day planning sessions with staff and trustees independently A series of carer focus groups to test out and discuss what we thought the priorities should be. Part two of this document details what you told us and what we are planning to do about it. 10
Part two: Programmes 7
1 Finding hidden carers It can take years before someone identifies him or herself as a carer and this can mean essential advice and support doesn t reach you or reaches you too late. It is estimated that nationally around two million carers cease caring and another two million begin each year, so there is by no means a static population of carers. To be able to provide the advice, information and support that you need and to help you to claim your entitlements, first we need to know who the carers are. Efforts to engage with those of you who are new to caring roles need to be constantly renewed and sustained. Therefore we have made finding carers who don t recognise themselves as carers sometimes referred to as hidden carers - one of our priorities. 12
Mission statements What you told us I have attended your Annual General Meeting only to find that there are too many carers in the borough not being paid the fair amount of benefits for their dedication to their families. I know other carers who don t get help. I tell them they should, but they don t think they are carers. You don t offer a booklet or on-line directory of all services. It should include all social groups, exercise classes, financial help and transport. Hillingdon Carers were the first people to recognise me as a carer after twenty years; my GP didn t even do that. Where we are now We have the highest carer identification rate in Greater London and work with just over 20% of the borough s 26,000 carers. However, this still leaves nearly 80% of you carers out there not receiving any support, so we know there is plenty still to do. 13
What we will do By 2020, we want to be supporting at least double the number of carers in the borough (at least 40%). We will enlist the help of other services to help us to identify and refer carers for help if they want it. We also want those of you that know other carers to spread the word and encourage newly-identified carers to ask for help and support. To work towards this, in the next two years we will: Develop and improve our outreach and education programme. This is where we educate a range of other professionals and services about the importance of identifying and referring carers for support Establish Carer Information Points in all seventeen of Hillingdon s Libraries Improve our website and the range of information that we provide Set ourselves an annual target for numbers of new carers and young carers to identify Ask all new carers what prompted them to seek support so that we can learn about what works. This will help to target our efforts where they are most effective Ensure that our Communication Strategy details the best ways to reach you and ensures that we have a range of ways to get our information out to you, for example through printed material but also through our website, social media and better use of partner publications and websites 14
2 Tackling loneliness and social isolation Each day in the UK, 6,000 people become carers and the transition to caring, and particularly to full-time caring, can cause loneliness and isolation. The loneliness you often experience is caused by a range of circumstances, many of which you have no control over. Indeed many of you described feeling invisible as the needs of your loved one take precedence over your own needs. 15
What you told us Currently, I spend all my time looking after my frail, nearly totally blind 99 year old husband. I do this willingly because I want to, but there is no time for social activities. It would be nice if someone would phone me at my home from time-to-time to ask how I am getting on with my caring [and my] emotional [state] and social life - a kind of counselling service. I would like to go to the massages classes, I do badly need that, but I would have to get two buses and bring my husband with me. You have no social life whatsoever as a carer. I don t feel part of society at all, I feel a complete outsider. [It s] always interesting to hear of [different carers ] experiences and [gives] an insight/opportunity to learn of new ideas/services which might be useful. 16
Where we are now Our current range of services, whilst not specifically designed to tackle loneliness, do give you social contact with others who understand what you are experiencing. We have excellent evidence from our Carer Cafes that being amongst other carers is useful social contact for many and provides the opportunity to learn from each other. We also know that at our cafes new friendships form and new social networks start to develop over time. We offer free one-to-one counselling and emotional support at every contact but we want to extend these opportunities so that we improve our range of help for you. What we will do We want all of you to have a social life outside caring and be able to attend activities and breaks from caring within your local community. To enable you to stay socially-connected we recognise that there needs to be a range of support available that reflects the fact that all of you have differing needs and might need help with the person you care for in order to get out and about. 17
In the next two years we will: Develop new approaches to delivering social programmes, through new partnerships and through volunteers Continue to seek sponsorship of Carer Cafes through the private sector so we can offer more of them and improve their geographical spread Work with others to find ways of supporting the people you care for to enable you to have time out for social opportunities Recruit, train and support new volunteers to grow our range of Carer Cafes to new parts of the borough Improve access to emotional support beyond our current arrangements and develop a menu of opportunities that includes one-to-one and group sessions. We will also explore the potential for telephone support as you suggest We will also rethink/redesign our therapeutic care service to see if we can extend the offer to those of you that are pretty much tied to the house We will also explore the opportunity to develop a series of carer-led social groups 18
3 Extending our range of services Most care happens within families and often families do everything possible to minimise the need for formal care and support by finding what works for them effectively personalised support in action. However there is no such thing as a traditional caring relationship and it is clear that there is no one-size-fits-all approach to supporting you. We are increasingly aware of gaps in our provision and we will strive to extend the range and geographical distribution of our services so they are easier for you to access. We also recognise that working carers cannot always take advantage of our help so we will be considering weekend and evening provision so that you too can get support at a time that suits you. 19
What you told us I d like the Carers Cafes more regularly. I have a part-time job and I don t finish until 1.30pm so I don t get to the cafes. I work at a school as a dinner lady; it would be nice if cafes ran a bit longer. Everything seems aimed at older people but if you are young and need care it seems very limited what is offered. Some activities should be for the people who are suffering from dementia. Could you please provide more exercise classes and body massages? I also want more courses relating to education where we can learn more skills. Singing for fun, for myself and other carers. Regular meetings for carers who don t have a caring role any more, so they are not suddenly isolated. 20
Where we are now We want to ensure that we support as many of you as possible. We have developed a strong range of services that have reasonable geographical spread across the borough and we think that we have gone some way to addressing the multiplicity of caring situations. However we recognise that there is more to do. You often bring the person you care for to cafes, clubs and trips in order to be able to access time with others. However we want to do more to ensure that this is a proper break for you and that you don t feel on duty during these activities. We have well-developed assessment processes that ensure that the support we offer is tailored to individual caring situations and we believed we had strong support programmes for carers of whatever age, however you are telling us differently. What we will do Therefore in the next two years we will: Work with other partners to develop activity groups for people with dementia that run alongside cafes and exercise classes so that they you can have a break safe in the knowledge that your loved ones are professionally looked after and undertaking stimulating activities of their own Identify opportunities to introduce flexible seven-day working so we can develop more weekend and evening opportunities, particularly for those of you who are trying to juggle work and caring 21
Lead the development of a Hillingdon Carers Collective so that all organisations with a remit to support carers are working better together and coordinating opportunities. This will improve your access to support and make finding it much easier Continue to improve the geographic reach of our services and use your feedback to plug identified gaps Extend our use of volunteers to make sure we can respond to the geographical demand for services Work through the Carer Collective to develop a Carers Hub in the south of the borough, where we have a more limited range of support services 22
4 Supporting you to look after your own physical and mental health Providing care for a loved one should not cost you your mental and physical health. Sadly however we know that, for some, caring can be emotionally and physically draining and that many of you experience stress and anxiety caused by the nature and extent of your caring responsibilities. Often it is difficult to look after your own health, take regular exercise and find the time to access your own health appointments. We also know that health professionals often don t recognise the specific knowledge and expertise that you have about the person you care for. We firmly believe that health services need to engage better with you and that they should be helping us to identify carers and referring them for support. 23
What you told us In the NHS there is little acknowledgement of how well we know the person and how long we have looked after them, all the things we have tried, researched, bought Mental health services, LBH and the NHS are very disjointed; to check appointments and contact staff seems to be very complicated. A single point of contact would be nice. Can you push for this locally? I had a breakdown 25 years ago, which means that health-wise, I sometimes have to rest for longer than people seem to accept as reasonable for a person my age. I hope that Hillingdon Carers take this into account when I do their activities. Having to care for my husband of 88 years who has vascular dementia plus my son of 55 years with mental ill health, I feel isolated and, at times, abandoned. It s difficult to get an appointment, non-urgent appointments take more than a week. The [exercise] programme has helped my mobility and reduced my back pain and [my use of] pain killers. I dread the emergency appointment and get frustrated and terribly upset. 24
Where we are now We have a programme of awareness-raising sessions for practice staff at GP surgeries to promote the importance of identifying carers, referring them for support and offering flexibility in appointments. We also offer education to other professionals about caring issues. We provide these for schools, universities, library staff and many others. We have a strong exercise programme offering you a range of exercise sessions for all ages and abilities, from chair-based exercise and yoga to more dynamic cardio and dance sessions. Our young carers have access to a good range of sports facilities from five-a-side football to professionally-facilitated gym training. We are confident that our therapeutic care and pamper days provide you with some light relief from the stresses of caring. But, for those of you who need more intensive support, we offer emotional support at every contact and a free counselling service. In addition we offer a range of carer training, trips and cultural activities that we hope will help you to forget about caring for a few short hours, to learn new strategies to help with caring and to pursue a hobby, or learn a new one. What we will do In the next two years we will: Promote and widen opportunities for carer health checks, such as Health MOT days and opportunities for you to meet health professionals face-to-face 25
Develop a series of volunteer-led Healthy Carer groups, such as walking groups, swimming clubs and dance collectives Work with our current volunteer counsellors to design a volunteer-led emotional support programme that you can access at Carer Cafes Recruit and train a further ten volunteers by summer 2017 to expand our capacity for support Work more closely with the emerging GP Networks to secure their commitment to promoting your health and wellbeing in an accessible and flexible way Extend our range of Health Matters fact sheets Help you to access health information through new Carer Information Points in all seventeen Hillingdon libraries Work with other Third Sector organisations to develop peer-to-peer support and group support to help you to manage your own longer-term health needs Develop a borough-wide, collaborative carer training programme to give you the skills you need to better manage your caring roles 26
5 Helping you to manage your caring situations Whilst many of you enjoy caring and find it affirming and satisfying, we also know that the potential negative impacts of caring are numerous and well-evidenced. We know we need to respond to what you are telling us about your lives by strengthening the range of help and support that makes a difference to how you manage your caring situation. 27
What you told us I need advice to help my disabled son get independent living and the right support and help. The training provided by Admiral Nurses was invaluable. More refreshers would help. Some activities should be for the people who are suffering from dementia and [there should be] some training for the carers for better understanding of the person you care for. Appreciate the carers group in Torrington Road, it s good to meet other carers. It s wonderful to have a chat with a variety of different carers... It s always interesting to hear of their experiences and gives an opportunity to learn of new ideas or services which might be useful. 28
Where we are now We currently offer you training to help you to better manage some of the challenges of caring, such as moving and handling, managing wheelchairs and basic first aid. We also offer free legal advice clinics through our friends at Turbervilles Solicitors. Our support services help many of you to manage your caring situations through talking to other carers or to improve your health through our exercise programme. You have also told us that you highly value our Information and Advice Service and we have an excellent track record in helping you with successful claims for Carers Allowance and other care-related benefits. What we will do Over the next two years we will: Develop a comprehensive training programme with a range of other providers so that you have plenty of opportunities to learn about all aspects of caring and that it is easy for you to access Grow our Advice Service and provide more outreach and drop-in sessions across the borough to ensure that as many of you as possible can access the information you need and the support you might need to claim benefit entitlements Continue to develop our range of health and wellbeing services so that we can help you to overcome the potentially negative impacts of caring 29
Further develop our range of Fact Sheets to ensure that we provide you with a rich and diverse range of quality information that covers all aspects of caring Continue to develop new partnerships and collaborations so that your experience of carer support is of a more cohesive and joined up programme 30
6 Young carers We believe all young people have a right to a future and we know young carers can be disadvantaged in life as a direct result of their caring situations. We want to ensure that they do not have to carry out unsuitable levels of care or tasks that are inappropriate for their age. We also want to ensure that they are supported so that their life opportunities are not restricted by their caring roles. 31
Young carers told us Caring matters but it is not a career choice. It (caring) feels easier to talk about now because I know it s nothing to be ashamed of and other people have the same situations. [To make it better] there should be not as many people, more clubs and more trips, especially at Christmas time. It s good to get a break. I used to live with my dad and my mum but dad is ill and we used to get the brunt of his moods. Now I just live with mum and it helps to get space from each other if we have had a ding dong. I used to feel insecure and found it hard to make friends but I came here and found it easier. 32
Where we are now We have a good range of support for young carers with after-school and Saturday clubs, in addition to a strong school holiday activity programme. We also offer trips out and residential weekends away and provide information and advice, emotional support and advocacy for the young people we work with. We run a specialist project for young carers supporting a parent or family member with a mental illness or drug or alcohol problem. We are working closely with whole families as part of this project and have started to develop our whole-family offer. We have a new supported transition project for young adult carers called N-HANCE. This project provides support, training and a social programme for young adult carers from 17-24 years to help them into training, further education, volunteering, apprenticeships or work. We have developed good relationships with a number of schools and our outreach programme involves regular presentations in schools, to help and encourage them to improve support to young carers at school. Finally, we have aspiration-raising opportunities for young carers with Brunel University and Bucks New University and a burgeoning relationship with Uxbridge College. We believe our range of support to young carers and the skills of our young carers team should be celebrated. We want to promote Hillingdon Young Carers as an example of good practice and we want to secure more expert leadership for the development of our young carers services into the future. 33
What we will do Over the next two years we will: Develop a strategic leadership group to help develop our services and to secure recognition of young carers more widely Write a separate two-year delivery plan for young carers structured around all our programme, but with tailored responses to the unique needs of the young people we work with Develop our new supported transition project N-HANCE for young adult carers to help them to make a smoother transition into adulthood. We will develop clear targets for helping young adult carers to achieve accredited qualifications and access training, volunteering and employment Continue to grow the range of educational and social opportunities for young carers and increase their geographical spread to improve their accessibility Continue to raise awareness of young carers as part of the extension of our outreach and education programme and measure efficacy through referral recording Work with young carers to identify gaps in services and bid for resources accordingly Develop our whole-family offer so that we can offer a range of family activities 34
7 The carer s voice We strongly believe that you have a critical role to play in the development of effective support services. Indeed, a guiding principle of Hillingdon Carers is that carers should play a major role in shaping and directing our work. We have made some progress in ensuring that our priorities reflect your priorities and that our support is in tune with your needs and desires. We also recognise that you want to influence the statutory services that support you and the person you care for, which can present more of a challenge. 35
What you told us Is there any day centre? Is there a hydro-pool? If there is, where? It would be nice and helpful if you could provide a named person to contact. The current changes to care provision have caused huge difficulties to my mum and me. She has lost the care agency she has been with for five years. Although my husband has a carer in the mornings to help shower and dress him this service has deteriorated drastically. Some days we get no-one. My mum will soon need constant care at home. I work full time from Monday to Friday and the only benefit I have been offered is 57.92 a week. How can I leave my employment and take care of her on this benefit? A respite week should be given to all carers to have a holiday once a year with vouchers given. The Conference gave us access to senior council people and lots of information. 36
Where we are now We currently provide some opportunities for you to have a voice. These include: An Annual Carers Conference giving updates and access to senior health and social care officers A 6-monthly Carers Survey to collect your thoughts on a range of issues and to feedback on our services Supporting a wide range of carer consultations for an extensive range of local and national organisations 25% of members of our Board of Trustees and staff team are carers or former carers Collecting case studies and your personal experiences and using this evidence to support our case for investment in new and existing services Young carers co-design their summer and school holiday activity programmes However, we know that this can be improved. Now, possibly more than ever before, your voice in the development of policy, plans and services is critical to ensure the best use of resources. We aim to strengthen your voice and support others to adopt good practice in consultation, engagement and co-design. 37
What we will do Over the next two years we will: Establish a Carer Collective for the borough to ensure all support is better coordinated and that organisations work better together to listen to what you are telling us Develop a carer engagement protocol, which will encourage best practice in carer consultation and engagement Work closely with Carers Trust Thames and other partners to develop mechanisms that better reach isolated and house-bound carers Redesign our website to make it clearer and more user-friendly for you. We will improve navigation and ensure that information is easier for you to access Increase our use of information technology and social media to advertise consultation activities for those of you that would like to get involved Support the London Borough of Hillingdon in the delivery of a new Carers Assembly for Hillingdon Work with others to provide a range of other mechanisms for you to have your say 38
Part three: Making it happen 7
Making it happen Delivering the strategy Delivery plans: Our strategy is very broad and covers a five-year period, which is often difficult to predict. Therefore all the detail of how we will move forward on our commitments are contained in a two-year Delivery Plan for adults and a separate two-year Delivery Plan for young carers, based on the two year actions detailed in the section on Programmes of Work. The staff team has an annual planning day with Trustees and the current two-year Delivery Plan is in development. These will be available from Hillingdon Carers in August 2015, August 2017 and August 2019. Staff supervisions and annual appraisals will be informed by their commitments in the organisational Delivery Plan and we have reviewed our processes and documentation accordingly. Governance: Regular progress reports will be presented at Trustee Board meetings and staff members will be asked to present on their own specific areas to Trustees. 40
Making Mission it happen statements Measuring and recording progress Current arrangements: We regularly monitor and evaluate our services; indeed we have to produce detailed and comprehensive monitoring information for a range of funding bodies. We generate this information through: Twice-yearly Carers Surveys securing feedback from around 80 of you per survey. The maintenance of statistical data which gives us a profile of you, our service users, and details the volume of support we provide. Use of anecdotal qualitative evidence and case studies to bring your experiences of our services to life. Short evaluation questionnaires after every trip, arts course or other activity to evaluate each service. By collecting your responses we can make sure we continue to provide what is most important to you. Young carer questionnaires and parental questionnaires help us to monitor the responses to, and value of, our young carer support programme. Feedback and testimonials from partners, funders, health and social care professionals. 41
Making it happen Improving outcome and impact assessment: Over the next two years we will: Introduce the Carers STAR assessment tool for some projects to assess the impact of our services on your lives We will be using the Patient Activation Measure (PAM) tool in our Carer Health programme Finally, we are improving internal communication, record-keeping, data production and overall coordination of our activities through the introduction of a new Charity Log system The new tools detailed here represent a significant investment in time, staff training and licenses. 42
Acknowledgements 7
Acknowledgements We would like to thank all of you that completed our questionnaire, helping us to set the priorities detailed here. In addition, thank you to all of you who have passed on comments, suggestions and personal stories at cafes, clubs and classes your experiences are critical to ensuring we are focusing our efforts where they are most needed. Our further thanks go to the carers that gave up their valuable time to attend one of our focus groups. You are too numerous to mention by name but we really appreciate all of your feedback please keep it coming! We would also like to take this opportunity to thank the London Borough of Hillingdon for their significant financial support which makes the majority of our services possible. In addition many thanks to other funding bodies who have helped us to extend opportunities for valuable support for the borough s carers. We look forward to a continuing relationship with you. Finally our thanks to our many colleagues across both the voluntary and statutory sectors who have commented, read, supported and generally helped to shape our thinking. We appreciate your input and look forward to our continued partnerships as we deliver on our plans. The Staff, Trustees and Volunteers of Hillingdon Carers 44
The young carers project helped me because I can get a break when times are difficult at home, you can forget what s worrying you.
And finally I appreciated the time out for myself. I have not painted for ages at home on my own, but after finishing this course I have been inspired to go out and buy paints which I have been using 5 or 6 days a week to paint while my mother is asleep in the afternoons. The course has boosted my self-esteem and confidence in myself. I have been going to galleries and getting art books out of the library to copy the paintings. Painting has given me a way to relax, be myself and do something for me that makes me happy, and even gives my life a sparkle that I had lost. The course has done more for me than even a holiday, as I have gained a hobby once again that I had let slip due to my caring commitment and job. Hillingdon Carers Luther Bouch House 126 High Street Uxbridge Middlesex UB8 1JT t: 01895 811206 e: office@hillingdoncarers.org.uk w: www.hillingdoncarers.org.uk