Shining a light on carers’ rights

Making sure carers get the support they need

With ‘Caring for your future’ as the theme for this year’s Carer’s Rights Day, members of Rowcroft’s Education Team have been busy spreading the word about the many different ways in which carers can plan ahead, not just for the person they’re caring for, but also for their own future. Working in partnerships with carers’ organisations, the team offers education and training in best practice for end-of-life care, helping health and social care colleagues to deliver the very best care and support. A key partner is Torbay and South Devon Foundation Trust – where Carers Lead Katy Heard collaborates with Rowcroft in her work to support local carers. Here Katy sheds some light on the important role that carers play, what their rights are, why carers often aren’t getting the support they need, and why it’s essential that carers look to plan ahead.

Who is a carer?

“Most people don’t realise that they are carers,” says Katy. “And they’re not aware of the support that’s available to them. In Torbay, only about one in four carers are receiving the support they should.

“Carers are family members, friends or neighbours who support someone who cannot manage without them. This may be because of a physical, hearing, visual or learning disability; a drug, alcohol or mental health issue; because they are frail or vulnerable; or because they have a serious illness or health condition.

“Many people gradually become carers as someone’s condition deteriorates. They may end up doing more tasks or having to help more. Sometimes when couples get older they become carers for each other. Sometimes children become carers for their parents or siblings.  So long as they are doing it voluntarily and not being employed to care, then they are carers and have carers’ rights.”

Carers’ rights

“Everyone has the right to choose whether they wish to care and to determine the tasks they undertake and the level of care that they provide.

“If someone cares for an adult, they have many rights under the Care Act 2014. These include the right to an assessment of their own needs which helps identify if they need any support. If the person they care for has a social care assessment (and agrees), then the carer should be involved and have their needs taken into account too, such as their need for a break. If someone cares for a person in hospital, they have the right to be involved in discharge planning.

“At work, carers have the right to request flexible working (at present only when they have worked for that employer for six months) and to have ‘reasonable’ unpaid time off to deal with a caring emergency. Carers’ rights at work are due to be improved in 2024.”

The impact on carers

“Torbay has very high numbers of carers who are providing over 50 hours of care per week. Dedicating such a large amount of time to caring has a huge impact on their free time and their ability to work or enjoy retirement. Carers often neglect their own health and wellbeing, and caring often affects their sleep as well as their physical and mental health.”

Planning for the future

“Carers often find it difficult to discuss the future or plan ahead, but it is vital. We encourage them to plan for if they have an emergency or if they need time off from caring for their own hospital admission/operation. They should build in regular breaks from caring – sometimes these can help towards longer term plans. For example, if the person they care for goes for a short stay in residential care, this may then become a place they would consider for long-term care if the carer is no longer able to offer support.

“It’s also important to discuss deterioration and dying whilst both people are able. This should include power of attorney and advance decisions (living Wills), plus details of what is wanted at funerals or choices around death and dying. There is never an ‘easy’ time to discuss these, but the earlier they are done, the better it is for everyone.”

For further information about advance care planning, please see Rowcroft’s ‘Planning for the Future’ Hub which includes information on: having conversationsadvance decisions to refuse treatmentplanning for the future and Treatment Escalation Planslasting power of attorneysupporting someone with a learning disabilitysupporting young people and childrenmaking a Willpreparing digital assetsplanning a funeral, and organ/corneal and tissue donation.

Support for carers

  • The Carers’ Passport gives free hospital parking and works as a discount card and emergency card, so a back-up plan is activated if the carer has an emergency.
  • If you care for someone in Torbay, Carers’ Aid Torbay will provide advice on cost-of-living, finance and benefits. There’s also a carers’ phoneline that makes contact with isolated carers. Torbay Carers Service is also available on 01803 66 66 20, or by email at signposts@nhs.net or on their website at: tsdft.uk/carers.
  • If you care for someone elsewhere in Devon, you can contact Devon Carers on 0345 643 4435, email: info@devoncarers.org.uk or visit their website at: devoncarers.org.uk
  • Across Devon there are events raising awareness about carer support and carers’ rights. For example, there is a carer support event at Exeter Corn Exchange on Thursday 24 November between 10am to 4pm.

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