Statistics from the charity Carers UK show that in the UK, 1 in 9 adults have some degree of a caring role and 1.5 million people provide 50 or more hours of unpaid care per week. The 2021 Census showed that there are approximately 128,200 young carers in England and Wales.
So, when we talk about ‘carers’, who is it we mean? According to the NHS a carer is:
‘Anyone, of any age, who, in an unpaid capacity looks after a family member, partner or friend who needs help because of their illness, or disability and the person cannot cope without their support.’
It can be difficult for carers to see their caring role as separate from the relationship they have with the person they care for, whether that relationship is as a partner, parent, child, sibling, or a friend. When people act out of love and responsibility it can be hard to recognise that things have changed. Many carers do not see themselves as carers and it takes an average of two years for someone with caring responsibilities to acknowledge their role.
There is tailored and specific support for family carers (whether adult carers or younger carers) from national and local grass roots organisations. MS-UK’s helpline is available to anyone affected by MS, including family carers and we are always happy to provide as much support as needed, whether that is sharing resources and information or providing emotional support.
MS-UK’s Peer Support service also has a ‘Caregivers’ Peer Pod’ that has been created to provide a welcoming and supportive online space for anyone who supports a loved one living with MS. This peer pod provides the opportunity to meet others that are in similar circumstances, to share practical tips and coping strategies, talk openly about their own feelings and concerns, and gain emotional support and empathy from one another.
MS-UK wants to make sure that carers know where to turn if they need emotional and practical help.
As with MS, there are different charitable organisations providing support for carers. The national charities that support carers are:
Carers UK offer support across the nations and have guides on carers rights, information on carers assessments, guides to caring, and provide support with finances and benefits. They also have a very active online forum for carers and a freephone helpline 0808 808 7777 available 9am to 6pm Monday to Friday. Or you can email to advice@carersuk.org
Carers Trust have contacts with many local carer organisations and help people gain breaks from caring, give information relating to benefits health and wellbeing. The Carers Trust give specific support and information for young carers and work across all nations. To find your local Carers Trust Network Partner call 0300 772 9600 available 9am to 5pm Monday to Friday. Or you can email to info@carers.org
Both charities are campaigning organisations and campaign for better rights for unpaid carers and raise awareness and visibility of the needs of carers.
Two of the recurring campaigns to help raise awareness of carers are Carers Week and Carers Rights Day. Local organisations will likely hold events throughout carer’s week that will connect carers and raise the visibility of carers in the community. Carers Rights Day is an annual day that carer support charities will do their best to make sure that carers know about the rights they have.
We know that different people need different kinds of support and support services for carers are no different. Locally, there may be carer support organisations working in your area that will help both adult and young carers. They may offer a range of services including, training, respite, information and advice or advocacy, and may also hold regular social events and support groups.
Both Carers UK and the Carers Trust have databases of local groups supporting family carers. You simply input your town or postcode and it will help you find a local organisation
Carers UK information on ‘Support where you live’
Carers Trust information to help ‘Find carer services near you’.
If you have a caring role, it is well worth becoming known to your local carer support organisation. They will have hyperlocal knowledge of support in your community, will possibly have access to additional grant funding and will likely run groups and activities. Local carer support charities are often able to support carers to get a break from their caring role if that is needed. Local carer support organisations will also engage with carers around understanding the needs of carers locally and work with local health and wellbeing boards and clinical commissioning groups to make sure that the views of carers are represented.
Both Carers UK and the Carers Trust have a presence and actively support carers across the nations of the UK. There will also be many local and grass roots charities and organisations supporting family carers.
Carers UK information for Wales, Northern Ireland and Scotland
Carers Trust information for Wales, Northern Ireland and Scotland
Dewis Wales is a Health and Wellbeing Wales Partner website with a range of information relating to services for both adults and children. They have specific information aimed at carers in Wales.
NI Direct has information and advice aimed directly at carers in Northern Ireland. It is also suggested that you contact your local Health and Social Care Trust as it is likely they will run groups and services for their communities.
Care Information Scotland is a web-based resource that provides a central point to help guide people to care and support options in Scotland. They have information for carers.
A young carer is anyone under the age of 18 who helps look after a relative with a disability or illness. Young carers often find themselves helping with practical tasks like housework shopping and cooking but may also have more substantial caring roles.
If there is an adult being cared for, the local council with responsibility for care and support services has a duty to consider whether there are any children involved in providing care, and if so, what the impact is on that child or young person. The child or young person may be eligible for support through an assessment with social care. In the case of young carers, the local authority with responsibility for social care has a duty to assess ‘on the appearance of need’. This means a ‘request’ for an assessment does not have to be made and if a professional identifies a young carer with needs, they should arrange an assessment. The local authority also has a more general duty to ‘take reasonable steps’ to identify young carers. Carers UK has detailed information aimed at young carers and has different versions available relevant to each of the home nations that cover young carers assessments and young carers rights.
The law says that local authorities must take a ‘whole family’ approach to assessing and supporting adults, so that young carers’ needs are identified when undertaking an adult or adult carer’s needs assessment. Importantly, the law also says that local authorities should ensure that adult and children’s social care services work together to ensure assessments are effective.
The responsibilities of young carers can vary a great deal. A young carer may be eligible for support, even if they do not consider they do a great deal of caring.
There is almost certainly a local organisation in your area providing support to young carers, whether that is emotional support, leisure activities or support in schools. There is also a wealth of online communities, forums, chat rooms and social media support for young carers.
YACbook is a part of Carer Support Wiltshire, but has a whole website and community aimed at any Young Adult Carer.
The Mix provides support to young people. They provide free and confidential services. They have video content, support by phone and email and even provide counselling services. They have dedicated slots to support young carers to be connected and have a regular ‘young carers chat’. Their forum and online community is very active and supportive to young people.
Carers in each of the UK countries are eligible for assessments by their local authority or Health and Social Care Trust. Eligible individuals are entitled to a support plan. Every carer has a right to a carers assessment, or in Scotland, an Adult Carer Support Plan. This would involve a conversation with the local social care services (or in some cases, carer support organisations) about any difficulties the carer is facing and the type of support they may need. The outcome could be practical help, financial help, extra care to make sure the carer gets a break, gym membership, a spa day for the carer or even a carers emergency plan.
If you are an adult carer, to gain an assessment you should talk to your social worker, if you have one, or contact your local social services team to be able to request either a care needs assessment, for the cared for person or an assessment for the carer. If you live in England there will almost certainly be online information specific to your area, as under the Care Act 2014 the local authority has a duty to provide up to date and trusted information. Most local authorities have developed websites to meet this duty. Good examples are Hampshire, Newcastle upon Tyne and Northeast Lincolnshire. If you need help sourcing information specific to your locality please get in touch with the helpline, who will be happy to gather community resources and trusted information on your behalf.
In a survey about carers and human rights, less than 30% of respondents felt confident that they knew what their rights were. The British Institute of Human Rights (BIHR) have useful information on their website, highlighting all the relevant human rights. Carers also have the right not to be discriminated against or harassed under the Equality Act 2010. This means that a carer can seek redress if they think they have been unfairly treated due to their caring role. For example, a carer should not be treated differently in the workplace because of their caring responsibilities.
For carers who are in work, it is worth considering talking to your employer about your caring role. Some larger companies have policies about how they support carers (for example a workplace support group or private chat space on the intranet). Also, once your employer knows about your caring role, you will be protected from discrimination under the Equality Act 2010. The work-life balance charity Working Families exists to remove the barriers that people with caring responsibilities face in the workplace. They have a detailed factsheet called Balancing Work and Caring which covers taking time off work, flexible working, legal rights and more.
It is often the case that carers, particularly those with a substantial caring role will struggle for funds and financial resources. There are state benefits and charitable grant giving bodies that support carers. Charities can be particularly useful when it comes to carers in need of a respite break. The benefits system can be complex and difficult to navigate, with each benefit having its own set of rules. Working out what benefits you might be entitled to is a lot easier if you have up to date and trusted information and resources to help you.
The main benefit for carers is Carers Allowance. To be eligible for Carers Allowance you must be under state pension age, spend at last 35 hours a week caring for someone who receives the higher or middle rate care component of Disability Living Allowance, either rate of the daily living component of Personal Independence Payment or Attendance Allowance. Your earnings must be £139 or less a week (after deductions) and not be in full time education.
If you are already claiming state pension or other benefits but are a carer, it may still be worth claiming Carers Allowance, as you may have ‘underlying entitlement’ which can make you eligible for other benefit premiums.
Turn2Us is a charity supporting people with a financial need. They do this by providing a detailed A-Z of benefits and quality web-based benefit information. They have a free benefits calculator and a grants search tool that can help you find financial support.
There are charitable and grant giving bodies that support unpaid or family carers. Charities can be particularly useful when it comes to gaining a much-needed break from caring or for funding an aid to independent living that may make a caring role easier.
Independence at Home is a grant giving charity that provides financial help to people who have a physical disability or long-term illness and who are in financial need. Independence at Home can help with costs of home repairs, independent living aids and more.
‘Respite’ means getting a break from caring. Breaks are important for carers as no one wants situations to become difficult at home and get to a point where a carer can breakdown. It is known that regular breaks from caring can support a carers wellbeing. There are many options for breaks from caring, whether that is something informal like friends, family or even volunteers enabling a break or something more formal like a replacement care service or short stay in a residential care setting.
An assessment of your needs as a carer with the local authority would identify a need and would possibly provide resources to enable a break. Your local carers support service may well be able to help with information on local funding and possible charitable support.
The Respite Association provide short term assistance in the funding of appropriately qualified respite care for people with support needs so that a carer can take a much-needed break.
The Ogilvie Charities administer a financial resource called The Margaret Champney Rest and Holiday Fund. This fund can pay towards respite costs to ensure that carers can get a break from their caring role.
Revitalise is a national charity that provides respite care in a holiday setting for disabled people and carers and has been in existence for over 50 years. Revitalise and the MS Society work in partnership to provide funding, to help people affected by MS to use a Revitalise respite holiday.
Dewis Wales has a web page titled ‘short breaks for carers’, aimed at carers across Wales which may be helpful.
Care Information Scotland has information about short breaks and respite for carers. It includes links to grant giving bodies and charities that support carers.
If you would to talk to someone about being a carer, or would like help finding local support, you can contact the MS-UK Helpline on 0800 783 0518 or via email at info@ms-uk.org.
