East Sussex carers' partnership plan
Summary
This is our multi-agency partnership plan for carers of all ages.
It is a public commitment setting out priorities to meet the needs of carers in East Sussex across our services. This will be for 5 years from January 2025.
Carer foreword by Joanna Wood
This partnership plan comes at the end of a year that has seen some big steps forward for carers:
- The Carers Leave Act came into effect.
- Key campaigns on Carers Allowance overpayments.
- Fair Futures for Young Carers by Carers UK and Carers Trust.
These have made carers more visible than ever.
Care for the Carers launched a campaign that is increasing awareness of the importance of taking a break. They held their biggest Carers Voices conference yet, during Carers Week in June. There is more momentum and visibility around carers than ever before. For carers like me, the hope this brings is essential.
I became a carer before I became an adult, at 17. I have spent the twenty-two years since then caring. The last two years providing 24/7 care,18 months of that without a care package or respite. Like over a quarter of East Sussex carers, I have done this alongside long-term chronic illness and becoming visually impaired. I know what a difference it makes when the system works, and how devastating it is when you fall through the cracks or hit walls.
I have survived thanks to charities such as Care for the Carers, the Association of Carers and Headway. I have been unlucky with the system, but I also know I am not the exception. This is why the plan for carers is so essential. It has the potential to transform the experiences of carers and those they care for.
The plan’s potential comes from its co-production with carers and their organisations. It is built on carers’ voices and takes lived experience seriously. I implore every agency to support it. The plan is our best chance to make caring sustainable for carers and to lift them out of desperate circumstances, poverty and diminishing health. Without unpaid carers, no agency would be able to do their job; without this plan, carers cannot do theirs.
To carers wary of yet another glossy presentation and catchy initiative, I don’t ask you to believe the plan. Instead, I ask you to insist on receiving what it promises. Use it to hold organisations to account and to add your voice. Be demanding, expect to be supported.
Keep your passion alive for your right to a manageable caring role and for the person you care for having the right to quality of life. This plan doesn’t tell you to be quiet, it asks you to speak up.
Without unpaid carers, nothing would work. Let’s come together to make it possible for them to live rather than having to fight to simply survive.
Introduction
Throughout this plan we will consider the needs of all carers, including;
- parent carers
- young carers
- those from seldom heard communities.
The priorities and actions were drawn on insights from:
- the Adult Social Care Strategy 'What Matters to You'
- Care for the Carers – Carers Voices annual report and feedback from annual survey
- ASC Listening to You Survey responses
- Carers UK
- Census 2021 data
- GP Patient Survey 2023
Principles
These are based on National Institute for Health and Care Excellence (NICE) principles for working with carers:
- Information and support.
- Identifying carers.
- Assessing carers’ needs.
- Helping carers stay in, enter or return to work, education and training.
- Social and community support.
- Training to provide care and support.
- Psychological and emotional support.
- Support during changes to the caring role.
- Support during end-of-life care and after someone dies.
Carers partnership plan themes
- Early identification, recognition, and intervention.
- Access to respite, breaks and carer support.
- Health and wellbeing.
- Financial support.
- Peer support.
- Employment, education and training.
- Technology and digital approaches.
- Partnership working.
Definition of a carer
You are a carer if you look after, help or support someone who wouldn't be able to manage without your help.
You don’t have to live with the person. The help you give doesn’t have to be physical care – it might be emotional support, or more practical help. You may be caring for a partner, another family member, a friend or a neighbour.
This plan includes:
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young carers who look after a family member
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parent carers of children with special educational needs and disabilities (SEND)
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kinship carers (e.g. grandparents or other relatives looking after children whose parents are unable to look after them).
The person you look after, help or support might:
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be an older person
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have a physical disability
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have a long-term health condition
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live with a mental health condition
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have issues with drug or alcohol use, or
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have a learning disability, or are neurodivergent
Carers in East Sussex
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There are over 69,000 adult carers in East Sussex, plus an estimated 3,000 young carers This data is taken from Care for the Carers.
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The estimated economic value of contributions made by carers in East Sussex in 2021 was £1.64bn. Taken from Carers UK website
Census 2021 in East Sussex
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60% of carers are female and 40% male
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70% of carers are of working age
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29% of carers are aged 65+, this is 11% of all over 65s in East Sussex
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29% of carers have a disability compared with 20% of overall population
Rights and responsibilities
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The Care Act 2014 - duty to offer an assessment and arrange support for adult carers of adults.
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The Children and Families Act 2014 – parent carers and young carers right to assessment of own needs.
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The NHS Constitution commits the NHS to work in partnership with patients and carers and to ensure that its services are coordinated around and tailored to, the needs and preferences of patients, their families, and their carers.
The objectives of the partnership plan
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Providing an overview of carers’ needs in East Sussex.
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How we are currently meeting carers' needs.
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How we may need to use resources in the future.
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Addressing, where possible, identified gaps in carer support.
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Increasing identification of carers.
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Setting out how organisations will work together to continue to identify and support carers.
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Informing the commissioning of carers’ services.
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Agreeing aims with key partners.
What do we want to deliver?
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A co-produced partnership plan for carers
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Co-designed carers’ support services
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Integrated approach to supporting carers across the health and social care system
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Clear delivery plans to take forward work in progress and future plans
Key partners
These organisations are our key partners who have signed up to this commitment to carers.
Early identification, recognition, and intervention
Our goals
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Increase our understanding of the needs of carers
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Raise awareness to:
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Encourage carers to come forward
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Identify carers before a crisis
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Provide a consistent response from health and social care services
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Provide targeted support to carers
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Recognise key transition points for carers:
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Young carers changing/leaving school/moving from adolescence to adulthood
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Parents as carers as their disabled child leaves home or becomes eligible for adult services
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Carers aged over 75
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End of life and bereaved carers
The Carers’ partnership plan commitment
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Increase identification of carers
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Raise awareness of the needs of carers
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Provide appropriate information, advice and signposting to carers
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Carers recognised as expert partners in care
Access to respite, breaks and carer support
Our goals
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Improve access to respite and planned support.
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Improve awareness and understanding of support and services available to carers.
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Increased skills training for carers to provide care and support.
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Carers are supported to plan for the future.
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Support to a higher number of identified carers, targeting support to those with highest needs and those from underrepresented groups.
The Carers’ Partnership Plan commitment
- Increased awareness of, and access to, respite, breaks and support.
Health and wellbeing
Our goals
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Improve identification, recognition and support of carers in NHS primary, secondary and tertiary care services. Tertiary care is for people with complex needs
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Improve carers’ physical and mental health and wellbeing
The Carers’ partnership plan commitment
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Identify, recognise and support carers as experts in care and when they are patients in their own right
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Enable carers to look after their own physical and mental health and wellbeing
Financial support
Our goals
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Carers have the right information and advice to maximise income
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Carers are supported to access benefits
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Carers can make informed financial decisions
The Carers’ partnership plan commitment
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Use carers’ data and insight to further develop and implement the priorities of East Sussex’s multi agency financial inclusion programme
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Raise awareness of the needs of carers with the Financial Inclusion Programme
Peer support
Our goals
Build on existing support to carers that works well
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Carers can access a range of peer support
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Targeted and tailored peer support
The Carers’ Partnership Plan commitment
- Development of further Peer Support
Employment, education and training
Our goals
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Carers are supported to stay in, enter or return to work, education and training
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Employers are carer aware
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Employees are aware of their rights as working carers
The Carers’ Partnership Plan commitment
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To strive to be carer friendly employers
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To support carers in the workplace
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Consider a carer’s needs regarding work, education and training when addressing the care and support needs of the person they care for
Technology and digital approaches
Our goals
- Reach digitally excluded carers.
- Work towards digital inclusion of carers.
- Make best use of technology enabled care (TEC).
- Develop use of mainstream technology.
- Develop and improve online access and guidance for carers.
- Streamline data to improve the carer experience.
The Carers’ Partnership Plan commitment
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Ensure carers who are digitally excluded are not disadvantaged.
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Work with carers to make best use of technology and digital services.
Partnership working
Our goals
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Ensure broader stakeholder dialogue between Voluntary, Community and Social Enterprise (VCSE) sectors and statutory organisations.
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Ensure strategic developments, such as Adult Social Care’s Prevention Strategy, take account of the Carers’ Partnership Plan’s commitments.
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Cross-cutting commissioning to ensure carers’ support is integrated into health and care, and other statutory commissioned services.
The Carers’ Partnership Plan commitment
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To ensure carer engagement is included throughout the development of the Carers Partnership Plan.
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Meaningful integrated working with clear responsibilities for delivery.
Get involved in our next steps
We will be producing a more detailed action plan of how we aim to achieve our key themes. If you would like to get involved, as a carer, in the development of the next phase of this Partnership Plan please contact the Project Manager (Carers) or the Strategic Commissioning Manager - Carers