Carer strategy 2024-2029

Being defined by one word is a big responsibility that can either make or break our universe but it is one that is taken for granted, carer. Most of us have been defined from a young age never knowing that it was a choice that we could challenge.

The new strategy that we are embarking on hopes to help:

• clarify what that role is
• how to attain the help needed and challenge the stigma
• acknowledge the stereotyping of what a carer knows
• recognise the needs of the person in their care
• how to be kind to ourselves as carers

To my mind, this role acts as the gateway, glue and fixer for the service, staff, patients and pretty much anyone who needs us. It is the ambassador who connects, listens, and advises, mostly in the background ensuring the person being cared for is well versed and emotionally ready for the challenge of each day and situation.

Our healthcare system is so important as it is something everyone will have to access at some point in their life, from the time we come into this world and until we leave it. We are part of the privileged few that can work to make it better and in doing so, have an obligation to do it well through values of compassion and culturally aware environments.

The world around us is changing and our healthcare processes, training, and access to services, needs to change with it.

We need to work together to change attitudes one step at a time in our diverse community and with this, show generations to come that community spirit and understanding, leads to happy minds and bodies within our county.

Nothing great is ever easy to attain, but the right attitude and understanding of when to use skills and knowledge developed from strategic awareness, in-depth operational and inter-personal expertise, will help our partnership translate into a successful venture for all.

Pat Marshall
Carer expert by experience and co-producer of this strategy 

This strategy is for all unpaid carers that live in, or care for someone that lives in, West Northamptonshire.

Who is a carer?

A person that provides unpaid support to:

• a partner, family member
• a friend or neighbour who is ill
• someone struggling or disabled and could not manage without this help

This is distinct from a care worker, that is paid to support people.

The strategy sets out what we will do to improve the health and wellbeing of carers, we will:

• ensure carers are respected and that we understand more about what it means to be a carer
• develop high quality support services for carers that meet their needs and improves their lives as carers
• recognise carers and value them as partners in delivering services

This strategy has been written with carers that are experts by experience (EBEs). EBEs are local people that are carers themselves. They have been part of a co-production group to write this strategy from a West Northamptonshire carer viewpoint.

What is co-production?

When you as an individual are involved as an equal partner in designing the support and services you receive. Co-production recognises that people who use social care services (and their families) have knowledge and experience that can be used to help make services better, not only for themselves but for other people who need social care. 

For this strategy we worked together to ensure Carers are valued and have the right support to continue to care for as long as they want to. We wanted to create a vision for the future so all carers can:

• recognise they are performing a caring role 
• know where to go to ask for support 
• carry on in the caring role if they choose to 
• have access to timely, good quality information and advice when they need it 
• receive training in the condition for the person they care for, if they want it 
• live their best life alongside being a carer 
• be able to work, take part in education and activities alongside their caring role 
• take a break from caring when they need it 
• receive help and support to remain physically and mentally well 
• receive support to plan for the future, both in the caring role and afterwards 

For every hundred carers in West Northamptonshire

Number of carers per household

• 78 homes have 1 carer
• 19 homes have 2 carers
• 2 homes have 3 carers
• 1 home have 4 or more carers

Unpaid care hours

• 52 provide 19 hours or less a week
• 20 provide 20 to 49 hours a week
• 28 provide 50 or more hours a week

Male and female carers

• 49 are men
• 51 are women

Carers by age

• 2 are aged 15 and under
• 5 are aged 16 to 24
• 9 are aged 25 to 34
• 24 are aged 35 to 49
• 37 are aged 50 to 64
• 14 are aged 65 to 74
• 7 are aged 75 to 84
• 2 are aged 85 or older

Carers that also work

• 36 carers also work full-time
• 19 carers also work part-time
• 45 carers do not work outside of caring

Ethnicity of carer

• 89 are white
• 4 are Black, Black British, Black Welsh, Caribbean or African
• 4 are Asian, Asian British or Asian Welsh
• 2 are Mixed or Multiple ethnic groups
• 1 is another ethnic group

Main carer language

• 95 speak English or Welsh
• 2 speak other European languages
• 2 speak Asian languages
• 1 speaks an African language 

Carers and disability

• 64 are not disabled under the Equality Act: No long-term physical or mental health conditions
• 18 are disabled under the Equality Act: Day-to-day activities limited a little
• 10 are not disabled under the Equality Act: Has long-term physical or mental condition but day-to-day activities are not limited
• 8 are disabled under the Equality Act: Day-to-day activities limited a lot

Increase in carers

The 2021 census showed that the population of West Northamptonshire had increased by 13.5% since the previous census. This was the second highest increase in population in the East Midlands.

If that percentage increase was applied to carers, by 2031 there could be 36,006 carers in West Northamptonshire.

This represents:

• 428 more carers per year and is over and above those that cease to be carers
• the total number of carers increases by 36 new carers every month and will continue to rise as the population increases

Before we could write this strategy, we wanted to seek the views of carers in West Northamptonshire. We held face-to face engagement events in each of West Northamptonshire’s Local Area Partnerships.

We held these events at different times of the day to give carers the best opportunity to attend one of the sessions if they wished to. These included mornings, afternoons and evenings.

We held two online events and offered an online written questionnaire. The results of the engagement were shared with the EBEs and helped them to decide on a list of priorities to support carers. These priorities are the main themes of this strategy.

The strategy will be a framework for developing support for carers. Not just as a one-off but as a progressive process of positive change over the next 5 years. It recognises the increasingly important role that carers play in West Northamptonshire, alongside the wide variety of caring roles and the diversity of those within these roles, and it acknowledges that carers need more help and support than has been available in the past. Furthermore, this support should be joined up, particularly when accessing services across both health and social care.

The Care Act (2014) and Children and Families Act (2014) set out what support local authorities must provide for carers, as well as the cared for person. West Northamptonshire Council delegated these responsibilities when it commissioned Northamptonshire Carers to deliver these services for its residents.

Unpaid carers contribute the equivalent of 4 million paid care workers to the social care system.

Without the unpaid carer, the system would collapse, so it is vitally important that we continue to support and aim to improve support where we can.

Northamptonshire Carers have been commissioned to provide services on behalf of the council for a number of years. However, what professionals are aiming to deliver and unpaid carers’ experiences of support and services they receive might be different.

To better support unpaid carers in West Northamptonshire, commissioners and services need to maintain a good understanding of their populations.

To understand how unpaid carers feel as we start this new strategy, we looked at the recently completed national carer survey. This found in West Northamptonshire:

• carers who accessed services were generally happy with them
• only 1 in 5 carers said they had as much control as they needed
• 7 out of 10 carers said that the information/advice they received was helpful
• overall carers reported feeling tired, depressed and stressed

What support can carers currently access in West Northamptonshire?

Carer support services are provided by Northamptonshire Carers. Northamptonshire Carers are commissioned by to provide these services as well as carer assessment and reviews. 

Northamptonshire Carers has useful information which can be accessed on their website.

Examples of services currently offered for carers across West Northamptonshire:

1. Statutory Carers Assessments and Support Services 
2. Universal Carers Support Programme including general advice and guidance, helplines etc, Emergency Respite Care and Sitting Services
3. Targeted Carers Support Programmes for Mental Health & Learning Disabilities, Children and Young Carers, Bereaved Persons and Dementia
4. GP Accreditation Schemes
5. Breathing Space and Long Covid Support
6. Primary Care Network Age Well Team Members
7. New Long Term Condition Groups – Dementia / COPD / Diabetes / Sickle Cell / Fibromyalgia
8. Befriending (through VHSCE Partners)
9. Test and Learn Schemes 
10. Dementia Proactive and Crisis Response Line
11. Community Responder (through VHSCE Partners)
12. Overnight Sitting Service
13. Discharge support at Northampton General Hospital
14. Social Prescribing delivery partner

Help support people to recognise themselves as carers

People may not recognise themselves as a carer as they support someone they may do in a natural caring role e.g. their child. However, the difference is providing support to someone that might be ill or have a disability.

Identify more carers for support

Northamptonshire Carers keep a record of people that receive services. There are currently 10,984 (December 2023) known to the service.

According to census records (2021), as many as 33,007 could be a carer in 2024 over the age of 5, so there is a shortfall of as many as 22,000 carers in those known to services.

These carers may not be receiving any support at all or not all of the support they could be accessing. Indeed, they may not yet recognise themselves as carers.

Personal budget

Improve the assessment of a carer and in particular the calculation of a personal budget. A personal budget is money that is allocated by a local council to pay for care or support to meet eligible, assessed needs.

The money comes solely from adult social care. An individual can take a personal budget as a direct payment, or choose to leave the council to arrange services (sometimes known as a managed budget) - or a combination of the two.

Many of the services carers receive are through Northamptonshire Carers and would be classed as a managed budget. Some carers choose to receive a Carers support payment as a direct payment but there are inconsistencies in this process.

People may attend several of the support groups offered but the cost of this is not included in a carer’s personal budget.

The support a carer receives is developed with the assessing person and written into a support plan.

Carer and the cared for person assessments

Currently, council staff assess a cared for person and Northamptonshire Carers assess the carer. The Care Act (2014) states that with consent, the cared for person should be consulted as part of the carer assessment and vice versa. However, there are inconsistencies with how this is delivered.

Reviews of carer support plans

The self-assessment highlighted that not enough carer reviews had taken place. This is where a carer’s support plan is reviewed to see if the support has met the assessed need or if the plan needs to be changed. These should be after 6 months when a direct payment is given and yearly for the support plan.

There is no current government national strategy for carers. The last strategy was:

• Carers at the heart of twenty-first century families (2008 to 2018)

There has not been a dedicated cross-Government approach to supporting carers since the Carers Action Plan (2018 to 2020) ended in 2020.

The NHS long term plan published in 2019 set out some priorities for carers:

• more options for phone or screen-based consultations at home, rather than hospital out-patient appointments – which can be difficult to attend
• consultants going out to GP surgeries, rather than expecting patients to come to them
• the roll out of ‘top tips’ for GPs, which have been developed by young carers, which include access to preventive health and social prescribing, and timely referral to local support services
• improving the recognition of carers and the support they receive. This includes a plan to introduce quality markers for 
• primary care that can highlight best practice in carer identification and support. It will also include the adoption of carers’ passports in health settings 
• new commitments to helping carers when things go wrong. For example, the plan suggests that more carers will understand their ‘out of hours’ options 
• more carers will have “contingency conversations” so carers have appropriate back up support in place, if and when they need it
• an ambition to ‘bring down waiting times for autism assessments’ and the aim to ‘improve its understanding of the needs of people with learning disabilities and autism, and work together to improve their health and wellbeing’, plus to ensure that the NHS is ‘working more effectively with people with autism and their families’ 
• the plan states that the NHS wants to ‘provide the right care for children with a learning disability’
• mental health support available to a wider range of children and young people through community services and schools in England
• a new approach to young adult mental health services for people aged 18-25 with an aim to support the transition to 
  adulthood
• increased early detection of cancer through better testing and giving every child diagnosed with cancer, a comprehensive DNA test to determine the best way to target treatment
   

Nice carer guidance covers support for adults (aged 18 and over) who provide unpaid care for anyone aged 16 or over with health or social care needs.

It aims to improve the lives of carers by helping health and social care practitioners identify people who are caring for someone and give them the right information and support.

It covers carers’ assessments, practical, emotional and social support and training, and support for carers providing end of life care.

The guidance includes two quality standards and covers the following topics:

• information and support for carers 
• identifying carers 
• carers assessments 
• helping carers stay in, enter or return to work, education and training 
• social and community support for carers 
• training to provide care and support 
• psychological and emotional support for carers 
• support during changes to the caring role and during end of life care 
   

The Care Act (2014) introduced a series of duties for councils specifically aimed at carers. For more information see:

• Partners in Care and Health: December 2023

The Children and Families Act (2014) signified changes to the law to give greater protection to:

• vulnerable children
• better support for children whose parents are separating
• a system to help children with special educational needs and disabilities
• help for parents to balance work and family life

The following are from a Local Government Authority guide:

• local authority must consider any other assessment that’s been carried out either for the young carer or the person who is cared for (where relevant) 
• the local authority must assess: the amount, nature and type of care the young carer provides; the extent to which this care is relied upon by the family, including the wider family, to maintain the well-being of the person cared for; whether the care which the young carer provides impacts on the young carer’s well-being; whether any of the tasks which the young carer is performing when providing care are excessive or inappropriate for the young carer to perform having regard to all the circumstances, and in particular the carer’s age, sex, wishes and feelings
• after the assessment the council must: give a written copy of the assessment to the young carer and their parent (and anyone else the young carer of their parent asks them to), decide whether the young carer has support needs, if services the Council provides could meet those needs, and whether to provide services. This could involve giving help to the person that the young carer looks after, so that the young carer does not have to do so much caring. 
• after the assessment the council must decide: If any of the young carer’s needs for support could be prevented by providing services to: the person cared for, or another member of the young carer’s family; what the young carer’s needs for support would be likely to be if the young carer didn’t have to do any / all of the caring; any actions to be taken as a result of the assessment; and the arrangements for a future review
• the council must also identify the young carer’s friends and family and consider how they can help to meet the young carer’s outcomes
• assess whether young carers in their area have support needs and, if so, what those needs are
• ask the young carer and their parent for their views during the assessment
• take reasonable steps to identify young carers in their area who have support needs
• ask anyone else the young carer or their parent wants them to ask about their needs as part of the assessment (e.g. a young carer’s support worker, or the parent of a friend of a young carer)
• the assessment must be appropriate and proportionate to the needs and circumstances of the young carer. 
• the council must consider the young carer’s: age, understanding and family circumstances; wishes, feelings and preferences; what the young carer is looking for from the assessment (“outcomes”); any differences of opinion between the young carer, the young carer’s parents and the person cared for (in relation to the care)
• before the assessment the council needs to give information about the assessment that mean the young carer, their parent, the cared for person, or anyone else the young carer or parent wants involved in the assessment can take part in the assessment
• the assessor must be appropriately trained; have enough knowledge and skills to carry out that assessment

Reduce the waiting time for a carer assessment 

To minimise and monitor waiting lists and times for carer assessments, we will:

• introduce a triage system for carer referrals
• carer crisis will be a priority
• launch a campaign for the right to an assessment 
• provide information for carers at the time of the cared for person's diagnosis

Supporting carers to recognise themselves as carers

We will

• initiate a raising awareness campaign using social media and target hard to reach groups
• tell carer stories so people identify with their own life
• produce podcasts for carers

Identifying carers for support

Everyone has a role to play in identifying someone who is providing unpaid care. However, we will:

• set up a one-stop information shop for carers that will move around the LAPs
• use plain, non-jargon language
• use existing resources and learn from others

Carers and cared for person more joined up assessment

We will

• review assessments (WNC and Northamptonshire carers)
• scale assessments according to need, circumstances, choice and in a sensitive way
• carry out a joint assessment with consent 

A one stop shop for carers to go to for advice, support and signposting

One stop solutions for carers, where they can find the correct support, resources and information. We will:

• provide a one-stop information shop for carers and move around the LAPs
• provide information, support, signposting and social opportunities
• work with the NHS colleagues to support and understand more about conditions 

A directory of support for carers that is easy to follow

We will

• produce a WNC carer guide
• list forms of support, benefits, legal (PoA, mental capacity), DVLA guidance, advocacy, debt management, rights and Blue Badge requests
• include a glossary of terms and FAQs

Increase the respite choice and availability

We will

• understand what respite means to different people and support them to obtain respite 
• ask you what it means to have your own time as a carer 
• commission respite services with carers using co-production 

Support when carers are at a crisis point in a timely manner with agreed timescales

We seek to respond to carers at the times which their health and social situation has deteriorated, we will:

• support carers in a timely manner 
• triage and provide response times depending on need 
• explore alternatives to attending hospital such as using paid crisis workers at short notice 

Carers voices and views heard and respected by professionals as an EBE

We will

• use the experience of carers in training professionals 
• use advocacy groups or develop a carer support worker to represent carers 
• improve transparency, use language that is easy to understand and we will be more caring

Keeping carers healthy

It is important that carers stay healthy, both physically and mentally. We will:

• ask what the carer wants
• improve the quality of our assessments and be more in-keeping with the Care Act
• review the carer support plan not longer than annually

Carer training

To ensure that all carers are trained, specifically in the condition that the cared for person has. We will:

• provide free carer training and inform carers that it is available
• work with health colleagues for specialist condition-specific training
• link to training that is already out there and provided by others

Future planning

Having conversations between individuals, their families and /or care workers, and professionals. Particularly for degenerative and terminal conditions, we will:

• incorporate this into the guide - knowledge of advance care plans etc
• support carers to plan early
• provide information on advanced decisions to refuse treatment, wills, who pays for what, NHS continuing healthcare etc 

Carers help shape the market with commissioners

We will

• ask carers what the gaps are for them and involve carers in provider forums so they can influence 
  others
• use co-production to develop services that are fit for purpose
• use carers for scoring tenders

End of life support for carers

Caring for someone at the end of their life can be rewarding but also very challenging, we will:

• support carers with dying well
• teach carers the signs of end of life in carer training, so they are prepared 
• work with NHS colleagues to improve support for carers when the cared for person is in hospital

Address the postcode lottery

Communicating with the postcode lottery for services and support, particularly in rural areas. We will:

• ensure there is consistency in services provided across WNC
• assess for gaps in services based on location
• identify additional sources of funding (or re-direct) where there are gaps in services resulting in a post-code lottery

Address the transport limitations

We will

• include what transport is available in a carer guide for WNC
• explore a volunteer driver scheme
• deliver more services locally, so that carers do not have to travel 

What is our overreaching priority?

Working towards health and social care being more joined up to avoid multiple conversations. This includes commissioning carer services.

Actions to implement

• working more closely with the NHS to reduce multiple conversations
• explore further knowledge sharing between WNC and NHS
• work towards commissioning carer services jointly

An action plan will be developed for this strategy with input from a variety of groups and services, including Young Carers and people from communities that are underrepresented in services.

Our experts by experience have included a set of I statements. The I statements can be used to hold the council to account on successful delivery of the strategy:

• I recognise myself as a carer
• I feel that what I do as a carer is recognised, understood and valued
• I feel the communities around me understand my situation and support me to have a choice which is meaningful and 
  appropriate
• I feel that I am supported to look after my own health and wellbeing
• I have access to good quality information and advice which is relevant to me in my caring role
• I have access to training on the condition the person I care for lives with
• I am signposted to support which enables me to maintain my caring role
• I get to have a break and some time for myself which will give me an opportunity for a life outside of caring
• I am able to balance caring with my education, paid work, volunteering, and / or personal interests
• I am listened to and feel part of the team, planning and delivering care for the person I care-for, and developing service models with commissioners as an equal
• I know where to get help from when I need it including when things go wrong, challenging decisions, and getting my voice heard as an equal
• I feel supported when I am no longer able or willing to be a carer or my caring role ends
• I can make plans for the future 

How we will measure the progress

We will measure progress against the priorities in this strategy and strengthen transparency and accountability. Importantly, we will measure how well care and support services achieve the outcomes that matter most to people.

The consultation suggested that the council should review the strategy annually. This would then give us the opportunity to change focus, if this is required.

There are several ways we can check the progress of the strategy. From a purely numbers point of view, we can look at:

• how many more people are identified as carers
• how many people receive a carer assessment and have their support plan reviewed at least yearly
• how many people are given advice on benefits and services
• how many people are signposted to access services designed to support carers
• how many people take part in training
• how many people take part in hobbies or courses
• how many people access respite services
• how many people are supported to produce crisis plans
• a reduction in the number of people experiencing carer crisis
• how many people are supported to plan for the future

These are useful measures for the council. However, what matters to individual carers are the effects on them of being in a carer role, when they might have a job, other people and themselves to care for. This affects their quality of life and both physical and mental health.

Our carer experts by experience wanted us to look at measuring this, so we will introduce some tools, collectively known as patient reported outcome measures. These are specifically designed for carers around their quality of life and what is known as carer burden; how hard caring is for them and how it affects their wellbeing.

By using these tools when first working with carers and then at intervals thereafter, we can show that the support they are receiving is helping and for the carer to see that they are benefitting from these interventions.

We will also use a health inequality impact tool. There is considerable evidence of significant inequalities in health. Health inequalities are systematic, avoidable and unjust differences in health and wellbeing between different groups of people.

There is clear evidence that reducing health inequalities improves life expectancy and reduces disability across society. Tackling health inequalities is therefore a core part of improving access to services, quality of services, and health outcomes for the whole population.

Health inequalities may be brought about by:

• different experiences of the wider determinants of health, such as the environment, income or housing.
• differences in health behaviours or other risk factors, such as smoking, diet and physical activity levels
• psychosocial factors, such as social networks and self-esteem
• unequal access to or experience of health services

These conditions influence our opportunities for good health and how we think, feel and act, and this shapes our mental health, physical health and wellbeing.