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    Gateshead Adult Caregivers Strategy 2024-2029

    Foreword

    From Councillor Michael McNestry - Cabinet Member for Adult Social Care

    In introducing our strategy, I would like to recognise and express my appreciation to all caregivers supporting their loved ones, family members and friends in Gateshead. You are the unsung heroes at the heart of our communities, providing essential support to some of our most vulnerable people.

    This strategy has been developed across our Carers Partnership, and most importantly in partnership with caregivers in Gateshead, and we would like to especially thank those caregivers who generously gave their time to work with us to develop and shape the strategy; we hope the commitments we are making in the strategy give you assurance that your time and effort was worthwhile.

    The strategy sets out the ways in which we will work together to improve the offer to caregivers in Gateshead, to make sure that they can live thriving lives, where their own needs are fulfilled alongside their caring role, and where they are valued for the contribution they make as caregivers.

    Through our Carers Partnership we will oversee the implementation of the actions identified within the strategy, and address any obstacles to achieving the action plan. We will continue to raise the profile of caregivers in Gateshead and celebrate the crucial role that they have in supporting people with care needs.

    Introduction

    Unpaid caregivers provide an immense contribution to supporting the health and wellbeing of those who are cared-for in Gateshead. Local leaders recognise the significance of the unpaid caring role and partner organisations have set out an updated strategy to improve the lives of caregivers. This strategy outlines five key priorities and sets out a plan to improve services to better meet caregivers' needs.

    Who is this strategy for?

    This strategy is for adult (18+) caregivers living in or giving care in Gateshead. The 2021 Census identified that there are approximately 18,802 unpaid caregivers in Gateshead, around 10% of the total Gateshead population (population over five years of age). This is likely to be an underestimation of the true picture, as many caregivers do not identify with the term 'carer' or 'caregiver'. The frequency, quantity and manner of care provided by local caregivers varies greatly, as do the circumstances of the care. The Carer's Trust estimate that 19 million people in the UK have provided unpaid care in their lifetime (statistics from the Carers Trust poll (opens new window)), 73% of which did not identify themselves as a carer.

    Caregivers support people with a range of needs and long-term health conditions (for example, caring for an adult child with learning disabilities, a relative with serious mental health issues, those with drug and alcohol addiction, or individuals with health conditions such as Alzheimer's or Dementia), meaning the experience of caregiving can vary greatly. That said, there are some shared experiences and challenges:

    Who is a caregiver?

    In this strategy, the word 'caregiver' is used to describe someone who provides unpaid care. The majority of respondents to the Gateshead Carers Association 2020 survey (60%) did not like being referred to as 'carers' because 'carer' is often used to describe paid care workers. In countries such as Australia and Germany, the term 'caregiver' is used because it emphasises the 'giving' of time and care without financial support (find out more about international carer facts (opens new window)).

    There are many definitions of caregivers in the UK. The below definition is applied in this strategy:

    Caregivers are people who provide unpaid care to a friend, family member or neighbour, who, due to illness, disability, frailty, a mental health condition or an addiction, cannot cope without support.

    (taken from the Giving Care in Gateshead report (opens new window))

    During consultation, children and young people between 5-17 years old who provide unpaid care stated they would like to be referred to as 'young carers'.

    Who will use this strategy?

    There are many organisations that support caregivers, including Gateshead Council, Integrated Care Board (ICB), health partners and the voluntary sector. There is a shared a responsibility to support caregivers to live a well and meaningful life, however the Council and ICB have a leadership responsibility in making sure the aims of the strategy are met.

    A Carers Partnership Board has been established to challenge and support stakeholders in advancing the interests of Caregivers. It will help to deliver the commitments outlined in this strategy and monitor progress. The board is composed of caregivers with lived experience, carer organisations, staff from Adult Social Care, representatives from the ICB and health trusts, and other relevant individuals and voluntary groups.

    The Health and Wellbeing Board is responsible for ensuring that residents in Gateshead live healthy and happy lives. They have developed five key pledges through the Health and Wellbeing Strategy which reflect the Council's Thrive agenda:

    • putting people and families at the heart of everything we do
    • tackle inequality so people have a fair chance
    • support our communities to support themselves and each other
    • invest in our economy to provide opportunities for employment, innovation, and growth
    • work together and fight for a better future for Gateshead

    The strategy has also been developed to reflect best practice guidance such as the NICE Quality Standards for supporting adult carers (opens new window).

    Engagement and participation

    Caregivers have shaped the development of this strategy through workshops, in partnership with Healthwatch Gateshead and the Carers Partnership Board. Consultation took place with the Voluntary and Community Sector (VCS) including organisations such as: Carers Trust Tyne and Wear, Alzheimer Society, Gateshead Carers Association, and local Health Trusts. Engagement activity took place between 2021-2023.

    Some of the quotes included in the report reflect engagement through the 'Giving Care in Gateshead' research project (opens new window), led by Dan Taylor at the Open University, with support from Gateshead Carers Association.

    Aim of this strategy

    Gateshead should be a place where caregivers are recognised, valued, and supported to thrive, both in their caring role and as individuals. This strategy sets out a vision to improve the lives of caregivers in Gateshead. In doing so, we recognise the immense contribution caregivers make to our communities and demonstrate our commitment to supporting caregivers over the strategy term and beyond.

    Priorities

    Five key priorities have been developed, which reflect the ideas and feedback provided by caregivers between 2021 and 2023.

    1. information and advice
    2. valuing caregivers
    3. money and finances
    4. employment and education
    5. health of caregivers

    What have we done so far?

    The previous Gateshead Carers Strategy (2014-2017) aimed to:

    "Set out a framework for partners to work together to achieve the national vision for carers and enable people in Gateshead who have caring responsibilities now or in the future to have an ordinary life - a life outside of caring and an identity that is separate from that of the people they support."

    The 2014-2017 Strategy identified five key priorities:

    1. early identification and recognition of caregivers
    2. realising and releasing caregiver potential
    3. supporting caregivers to stay healthy
    4. a life outside of caring
    5. financial wellbeing and support

    While these priorities will be replaced by the new 2023-2028 strategy, the priorities identified in 2014 remain resonant. Throughout this document, we will outline the work that has been done to support caregivers in Gateshead, since the last strategy.

    What has changed?

    In 2019, Gateshead Council and the CCG (now ICB) commissioned Gateshead Carers Association and Carers Trust Tyne and Wear to deliver key services for young and adult caregivers across the borough. Each service was commissioned on a 5-year contract, from 2019-2024.

    Gateshead Carers Association deliver services for adult caregivers in Gateshead including; one-to-one support, support groups, financial and benefit support, Carer Wellbeing Grants, and short breaks. They also provide Adult Carers Assessments on behalf of the Local Authority.

    Gateshead Carers Association provide services to caregivers irrespective of the health and social care needs of the cared-for person, including dementia, cancer, substance misuse, mental health, learning disabilities, sensory loss, ADHD (attention deficit hyperactivity disorder), physical disability and kinship caregivers.

    Carers Trust Tyne and Wear deliver services for young carers and complete Statutory Young Carer Assessments. Young carers in Gateshead can access Carer Wellbeing Grants, social activities, wellbeing support and educational support. The Young Carers Service also host an Experts panel, through which young people make strategic decisions about the service.

    Carers Trust Tyne and Wear also deliver the Carer Relief Service. In 2022, they delivered 33,000 hours of care to allow caregivers a break from their caring role.

    Other services that support unpaid caregivers in Gateshead include Alzheimer's Society and Age UK Gateshead.

    Priorities

    Information and advice

    Good quality information and advice helps caregivers make well-informed decisions about care and support in relation both to their caring role and their own needs. Information and advice should be available in a variety of formats and accessible to audiences with diverse needs, including a digital offer and equitable information for those who are digitally excluded. Providing suitable advice and guidance to caregivers is a statutory duty within the Care Act (2014) and residents tell us they need timely access to health and social care advice and guidance. We are committed to improving the quality, accessibility and profile of information, advice, and guidance for caregivers in Gateshead.

    Caregivers said:

    Some people just don't know where to go, who to ask, and literacy skills have to be taken into consideration as the written form isn't always the best and people are reluctant to say they can't read or don't understand basic stuff, especially when the professional assumes the information is easy to understand and says "there you are, that leaflet will easily explain everything". How embarrassing!

    Caregivers should be encouraged to... see if they are entitled to some financial support even if they don't think they are entitled.

    More carers should be given information about what's out there...people need this information.

    What has been done?

    • Gateshead Council and the ICB commission Gateshead Carers Association to provide bespoke caregiver information, advice, and guidance on a range of issues such as health and wellbeing, money, and local services, using interpreters where needed
    • caregivers can access peer support through groups such as the Carer Café either online or in-person
    • caregivers can access signposting through Gateshead Council or Gateshead Carers Association to link with local organisations providing condition-specific support, such as Age UK and the Alzheimer's Society
    • young caregivers who are transitioning into adult services can access information, advice, and guidance from Carers Trust Tyne & Wear
    • Gateshead Council and the ICB commission several organisations to provide information, advice and guidance across topics such as benefits, debt, and housing
    • we have developed a partnership to improve the carers page on the Our Gateshead website, improving digital access to information and signposting on caregiving
    • Family Hubs, including the Autism Hubs, provide parent carers with a welcoming space to get the help they need on a wide range of issues

    What will be done?

    • ensure carers have access to information, advice and guidance which supports them in their caring role, in a format that suits them
    • ensure web-based information on caring is clear and easy to find. This should promote local services, activities, and key information
    • ensure information on caregiving is available in accessible formats, such as Easy Read and different languages

    Valuing caregivers

    Unpaid caregivers contribute significantly to the health and social care system and should be treated as equal partners in care, whilst enabled to care safely. It is estimated that unpaid carers in Gateshead contribute £660 million worth of care every year (according to Carers UK - valuing carers 2021 report (opens new window)). There is still a lack of understanding about the role of caregiving in wider society. We are committed to ensuring caregivers in Gateshead feel valued and involved in the health and social care system. We pledge to improve the identification and recognition of caregivers, and support them to care safely, as a valued part of the wider system.

    Caregivers may be entitled to short breaks or respite to have a break from caring, through the local authority. Accessing regular breaks can be fundamental to minimising the deterioration of physical and mental health that can happen because of caring. Entitlement to respite is considered during a Carers Assessment and Care Needs Assessment. We are committed to improving the uptake of Carers Assessments and ensuring caregivers and cared-for people understand the options available to them.

    Caregivers said:

    ...all caregivers' needs should be identified within a person-centred approach. Caregivers need to have flexible support when and where needed that can (and will most definitely) change as time goes on...

    I would like to see quality short term respite care in the home of the person I care for...oh how I would appreciate a couple of nights away occasionally.

    Early identification is a priority [because] high levels of stress can develop into more serious mental health issues including long term depression.

    It's vital that caregivers are directly involved in the planning of care... as patients often don't want their carer to make a fuss in case of repercussions from their GP or another professional.

    What has been done?

    • commission Gateshead Carers Association to provide Statutory Carer Assessments. Key staff received training to upskill the workforce and embed assessments into a wider, holistic support offer
    • in 2021, a single point of access for caregivers was developed through a partnership between the Council's Adult Social Care Team and Gateshead Carers Association. This process offers caregivers immediate advice on what interventions and support are available locally
    • since 2019, the Gateshead Carers Partnership has been expanded to include members from Healthwatch Gateshead, local voluntary organisations, health partners and local caregivers, who have taken an active role in the development of the group. The Gateshead Carers Partnership Board is now Chaired by the Service Director (Adult Social Care) which has strengthened the link between the partnership and the Council's Adult Social Care service
    • the Special Educational Needs and Disabilities (SEND) Strategy 2023-2026 commits to actively engage with parent carers to ensure their vision is heard
    • Gateshead Parent Carer Forum are important partners within the Special Educational Needs and Disabilities (SEND) system and contribute at a strategic level
    • Gateshead Carers Association are a community partner of the respite organisation, Carefree. This means they can refer carers to Carefree, which offers free access to hotel stays for caregivers, subject to an admin fee
    • Gateshead Carers Association offer access to their holiday home, Caldew House, in Cumbria for up to 5 nights per year. Stays at Caldew House are free for caregivers in Gateshead. To book a stay, caregivers must register with Gateshead Carers Association

    What will be done?

    • improve the uptake and experience of caregiver assessments
    • improve our understanding of different carer cohorts in Gateshead
    • promote a culture of understanding and awareness on caregiving within the wider community
    • improve access to respite for caregivers, including short-term emergency support and use of Direct Payments

    Money and finances

    Unpaid caregivers experience increased financial pressures because of their caring role. This has worsened due to the impacts of the Covid-19 pandemic and cost of living crisis and is expected to have a knock-on effect on carers' health and wellbeing. Carers Trust UK's annual State of Caring report (2022) (opens new window) highlights the impact of the cost-of-living on caregivers' finances, with over ¾ of caregivers reporting this is one of the main challenges they will face next year, and 52% reporting they require more financial support.

    We are committed to supporting unpaid caregivers to maximise their income and minimise the detrimental effects of the rising cost of living. We are also committed to supporting caregivers and cared-for people to access Direct Payments to improve choice and control around their care.

    Caregivers said:

    She was getting Carer's Allowance. Now she's retired, she's drawing her pension, she can't...that's gone, it's finished.

    This should be the time in life where we're having something of a life ourselves, and we're not having any of the life ourselves because every minute is worry, worrying about...money.

    [Managing] caring, childcare, work and keeping families together is a strained lifestyle - people [are] living longer so caring is longer and financially difficult.

    What has been done?

    • Gateshead Council and the ICB commission Citizens Advice Bureau and Gateshead Carers Association to provide one-to-one information, advice, and guidance on issues such as welfare, benefits, and debt
    • Warm Spaces grants to two caregiver organisations during winter 2022
    • Energy Roadshow delivers outreach advice and support across Gateshead
    • employ a Tackling Poverty Support Officer to lead work to reduce the impact of poverty

    What will be done?

    • improve access to financial advice and information, for example on benefits, and debt management
    • promote income maximisation and access to discount schemes
    • improve uptake and understanding of Direct Payments

    Employment and education

    Unpaid caregivers face significant challenges sustaining paid employment throughout their caring role. It is estimated that there are at least 2.5 million caregivers in employment in England and Wales (figures from Office for National Statistics - unpaid care (opens new window)), with 46% of carers in Gateshead in part time or full-time work (according to the 2021 Census (opens new window)). A significant proportion of working carers are required to leave their jobs because of their caring responsibilities, with 49% of respondents to Gateshead Carers Association 2023 survey (opens new window) reporting they gave up work fully or partially due to their caring role. For young carers transitioning to adulthood, caring responsibilities can make it more difficult to access education, and being in full-time education can prevent caregivers from accessing certain benefits. We are committed to improving opportunities for caregivers in Gateshead to seek and sustain meaningful employment and improve access to training and educational opportunities.

    Caregivers said:

    ...Caregivers that work are so stressed that their work can be affected.

    I could have gone back to work but my mam and dad were just going downhill dramatically... I was on a £40k job... I've lost all of that.

    What has been done?

    • commission one-to-one support to adult caregivers, including advice and guidance around work, benefits, and education
    • Gateshead Carers Association coordinate workshops on issues such as employment skills
    • Working Gateshead Service offers residents one-to-one coaching, mentoring and advice on getting back to work, tailored to individuals' needs
    • Gateshead Council Learning Skills offers free courses to residents in Gateshead on Employability, Family Learning and Maths and English

    What will be done?

    • train the employability and education workforce to promote the needs and rights of caregivers in Gateshead and improve early identification
    • ensure commissioned services support caregivers in the workforce and promote awareness of caregivers' rights
    • promote existing employability and education services to caregivers to increase volunteering and employment opportunities

    Health of caregivers

    Unpaid caregivers overall continue to experience poor mental and physical health compared to the wider population (according to Carers UK - state of caring 2022 report (opens new window)). 64% of unpaid carers report having a long-term health condition or disability compared to 54% of non-carers (statistics taken from Carers Trust GP patient survey (opens new window)). Research published by Carers Trust Tyne and Wear in 2022 (opens new window) showed that caregivers in Gateshead shouldered higher caring responsibilities during the Covid-19 pandemic. As a result of the closure of services, increasing caring responsibilities and the pressure of shielding, many caregivers' mental health concerns worsened through this period.

    We are committed to improving the health and wellbeing of caregivers in Gateshead and reducing the health inequalities they face because of the caregiving role.

    Caregivers said:

    Support should be given well before it becomes a crisis.

    That puts a strain on your mental health... when you've got to fight for everything.

    What has been done?

    • increase access to talking therapies and counselling in Gateshead for individuals with a range of mental health needs from low-level support to crisis intervention
    • Fund a Carer Relief Service to enable caregivers to have time off each week
    • fund voluntary organisations to deliver mental health initiatives such as those to reduce social isolation and offer physical and social activities across Gateshead, through the Mental Health Grants Scheme
    • commission Gateshead Carers Association to provide a range of advice, signposting, and support to caregivers in relation to preventing and responding to their health needs

    What will be done?

    • improve awareness among Health services around the needs of caregivers and support to identify caregivers
    • develop partnerships with Gateshead Primary Care Networks to improve GP Practices' ability to identify and support caregivers

    Summary

    The strategy has set out five key priority areas to improve the lives of caregivers in Gateshead:

    • information and advice
    • valuing caregivers
    • money and finances
    • employment and education
    • health of caregivers

    Gateshead Council, the ICB at Gateshead Place and their wider partners, are committed to ensuring that this strategy is more than just words on a page, and caregivers are asked to hold them accountable for delivery against all the priorities.

    A Delivery Plan sets out how we will achieve change relating to the priorities above. This is reviewed and updated regularly and available on the Gateshead Council and ICB Website.

    Appendix 1: key organisations

    Gateshead Council

    Gateshead Civic Centre, Regent Street, Gateshead, NE8 1HH

    https://www.gateshead.gov.uk/

    0191 433 3000

     

    North East and North Cumbria Integrated Care System

    nencicb-ng.enquiries@nhs.net

    https://nenc-newcastlegateshead.icb.nhs.uk/ (opens new window)

     

    Connected Voice - Our Gateshead

    One Strawberry Lane, Newcastle upon Tyne, NE1 4BX

    https://ourgateshead.org (opens new window)

     

    Carers Trust Tyne and Wear

    The Old School, Smailes Lane, Highfield, Rowlands Gill, NE39 2DB

    info@carerstrusttw.org.uk

    01207 549780

     

    Gateshead Carers Association

    John Haswell House, 8-9 Gladstone Terrace, Gateshead, Tyne & Wear, NE8 4DY

    enquiries@gatesheadcarers.com

    0191 490 0121

    Appendix 2: key references

    Appendix 3: policy

    There is a range of legislation which works to address the needs of caregivers in the UK. Links to key national legislation, policy papers and research briefings can be found below.

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