Putting carers on the map: Carers Week 2024

14 Jun 2024

As Carers Week 2024 unfolds from 10th-16th June, we want to acknowledge and celebrate the vital role of unpaid carers. This year's theme, 'Putting Carers on the Map,' seeks to shine a spotlight on the millions who dedicate their lives to supporting loved ones with illness, disability, mental health conditions, or addiction. Unpaid carers often juggle their caregiving responsibilities with their personal lives, experiencing significant impacts on their finances, employment, and overall health and wellbeing.

“Alongside many of our patients with MS an unpaid carer will be inextricably linked. This will be a family member or friend who provides support without which the person they are helping ( the patient Living with MS in this case) could not manage. This is often at a significant cost to themselves in terms of their health and life opportunities because they spend many hours each week putting someone else first. It’s so important as professionals to seek out the unpaid carers-who are pivotal to the ability of our NHS to meet needs , and to ensure that we are supporting them, meeting our obligations as set within the NHS constitution and the Health and Care Act statutory guidance”

Dr Sue Tresman, Independent Carers Lead for Surrey

The value of unpaid care in England and Wales is now estimated to be £162 billion, exceeding that of the entire NHS budget in England for health service spending, which by comparison was £156 billion for 2020-21. Even with NHS funding increasing annually, increases to social care funding have not kept pace, so the system is now relying more heavily than ever before on unpaid carers and would collapse without them (Sheffield.ac.uk )

According to the NHS, it can take an average of 2 years for someone to even acknowledge their role as a carer, subsequently 90% of carers in the UK do not hold any documentation to prove this but are in need of support (Identification | Carers UK

According to Carers UK there are 5.7 million unpaid carers across the UK. At one time 9% of the UK population are providing unpaid care. 4.7% of the population in England and Wales are providing 20 hours or more of unpaid care a week. 1 in 7 people are juggling work and caring responsibilities. 59% of carers are women. (Key facts and figures | Carers UK)

So, who is an unpaid carer?

“An unpaid carer is anyone who cares for someone who is ill, disabled, older, has mental health concerns or is experiencing addiction and is not paid by a company or local authority to do this. Primarily, this is a family member or friend. Someone who receives 'Carer's Allowance' is an unpaid carer”

Carers Week is not only an opportunity to raise awareness about the essential work carers do but also a call to action for policymakers, communities, and businesses to provide much-needed recognition and support. According to the new ‘No choice but to care’ report, published on the first day of Carers Week 2024, a staggering 82% of carers highlight the toll on their physical and mental health, and nearly 60% note that feeling valued would enhance their wellbeing. It's clear that more needs to be done to support these unsung heroes.

“Carers are a vital part of the MS community, and it is important to recognise when a carer needs support. Carers allow many people to keep living active lives and to help fill a gap of need to increase quality of life . To provide support for carers gives them strength to keep doing what they do and making them feel valued in this amazing unpaid role that they provide day after day. We celebrate our MS care community and praise them for all their hard work in helping many people live fulfilled lives.”

Here is a link to Revive carer video's Support for Carers at Revive (youtube.com)

Julie Dock, MS Specialist Nurse/Clinical Lead

A group who are often overlooked are young carers, this is someone aged 25 and under who cares for a friend or family member who, due to illness, disability, a mental health problem or an addiction, cannot cope without their support. Older young carers (16-25 years old) are also known as young adult carers and they may have different support needs to younger carers (Young carers). Children should not undertake inappropriate or excessive caring roles that may have an impact on their development. A young carer becomes vulnerable when their caring role risks impacting upon their emotional or physical wellbeing and their prospects in education and life. Using the care act guidance a local authority may become aware that a child is carrying out a caring role through an assessment or informed through family members or a school, so at this point should support the adult with needs for care and support which can prevent the young carer from undertaking excessive or inappropriate care and support responsibilities. There is clear guidance that where a young carer is identified, the local authority must undertake a young carer’s assessment under part 3 of the Children Act 1989 (Care and support statutory guidance - GOV.UK)

“My concern when visiting patients, is that they may not realise their children are young carers, even though their children are helping with hygiene needs, preparing food, shopping and other activities around the home the parent is not recognising this as caring. The parent may not be aware that there is support available for young carers, both in the community and at school. I feel it is the responsibility of the health professional to ask questions and help identify these young people, and to signpost them to organisations that will support them”

Anna Sprigings, MS specialist practitioner

The National Institute for clinical excellence highlighted the importance of support to carers through their guidance for people with multiple sclerosis. Carers, including young carers, need to be informed about their right to a carer's assessment and other sources of information and support that may be available (see NICE's guideline on supporting adult carersand the Young Carers [Needs Assessment] Regulations 2015).

There is increasing evidence that caring should be considered a social determinant of health (Public Health England, Caring as a Social Determinant of Health, 2021), so in line with this crucial need to support unpaid carers by improving education to healthcare professionals we’re looking forward to our upcoming Palliative Care MasterClass in November, which includes a dedicated session on unpaid carers.

This session, led by Mobilise, will explore:

  • how can clinicians identify and support unpaid carers?

  • the impact of Mobilise on carer support

  • carer assessment and legal support available to carers

We invite healthcare professionals to join us for our Palliative Care MasterClass in November to learn more about how we can collectively support and value our unpaid carers. Together, we can make a significant difference in their lives and ensure they receive the recognition they deserve.

Register now: https://neurologyacademy.org/events/course/palliative-care-masterclass-5

Other helpful information:


General information - including social, psychological and financial support amongst others

Young carers

Apps available

  • Helpful apps for carers

  • Jointly, app for carers by carers
    • There are various initiatives emerging to support carers, one of these is the ‘Jointly app’. Jointly combines group messaging and to-do lists with other useful features, including medication lists, calendar and more. Jointly makes communication and coordination between those who share the care as easy as a text message.

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