Carers- This one is for you.

Our Elevenses are monthly informal online meetings that focus on one area of mental health. This month we spoke, and listened, to Carers. We had a mixture of people show up on our screens, those with a personal lived experience of caring, those that worked in the field of supporting Carers, and even someone who researches a variety of aspects of being a Carer. A huge thank you to all of those that joined us and shared their story.

‘The Carer is just as important as the person that they are caring for’

After a round of introductions we kicked off this online get together by asking people about their experience of caring for someone. This started off a conversation around the challenges of being a Carer, the response received by society and the lack of recognition that Carers receive. ‘Society expects you to do it, to just get on with it, without acknowledging that it is a hard daily slog’. The main challenges that came up during this discussion were:

  • Lack of recognition from society
  • Lacking in community, feeling isolated and alone
  • Only having neighbour support
  • Restrictions to support due to the person you are caring for not wanting to accept it (Having to respect the other persons process and boundaries)
  • No time for self care
  • Losing your own identity into the “Carer identity”

These are all valid struggles and we want you to know that we see you in them. We might not be able to take those struggles away, but we wanted the participants of this meeting to not only come away having been heard, but also with some resources to help them continue.

We asked the ‘room’ what has helped them in these challenges and what advice they would give to others, in the hope that each person would be able to take something away for themselves. Here are few of the things mentioned:

We also discussed the things that Carers want to see more of, so that we can continue to advocate for changes in discussions with services.

  • ‘Being included more in conversations, this is vital when you are supporting someone, helping to share the support plan together so you know what is expected and what has been promised’
  • ‘Making services easily accessible’
  • ‘Offering training to Carers- So that we can help ourselves’
  • ‘More Carer friendly system’
  • ‘Recognition’
  • ‘More Carers allowance’

Last but not least, here is also a list of resources that have been given from those that understand, and those that have used these services themselves:

Devon Carers- ‘Devon Carers are so important, they were the 1st point of recognition for me’

Devon Carers ‘provide unpaid carers with the information and advice they need in their caring role.’

They have lots of resources on their website. including:

Carers Break Fund– The scheme provides a small amount of money (£50 minimum but an average of £187) to enable carers to enjoy an activity, hobby or anything else that helps provide time out from their caring role. Carers Break Fund – Devon Carers

Advice on caring for someone with their mental health- Mental health – Devon Carers

Time for you sitting service‘Devon Carers are working with providers from the voluntary sector, the third sector and community partners to deliver a low-cost sitting service, by providing volunteers to spend time with the person you care for whilst you take time out.’ Time for you sitting service – Devon Carers

Dias- For Carers that care for young people with SEN- ‘DiAS (Devon, Information, Advice and Support) supports children and young people aged 0-25 with special educational needs and disabilities (SEND), and their parents and carers’. Home – Devon Information Advice and Support (devonias.org.uk)

Admiral Nurses– For Carers that care for someone with Dementia- ‘Admiral Nurses are specialist dementia nurses. Continually supported and developed by Dementia UK, they provide life-changing support for families affected by all forms of dementia – including Alzheimer’s disease.What is an Admiral Nurse? | Dementia UK | Specialist dementia nurses

Kingscare- ‘Our Aim is, with voluntary support, to improve the quality of life of those in need with our community.’ Kingscare – Improve the quality of life of those in need

Dementia Carers Network– This organisation holds monthly peer support groups either online or face to face. These are run by Mary Sherwood and her email is: mary@4dementiacarers.org.uk

Parental Minds- Offers emotional support for caregivers and those they support. Parental Minds work with families and young people and aim to empower curiosity around mental healthcare through peer support, resource development, research, collaboration and networking. Home – Parental Minds

Other resources include:

Registering as a Carer to your GP- This can help with priority appointments, free fire home safety checks, safeguarding advice and support, priority in power cuts

Looking After Me Plan- This can be accessed via the Mind website here: Looking after yourself as a carer – Mind

Triangle of Carecase-study-supporting-well-carers-included.pdf (england.nhs.uk)

ADoddle– Community map of support in your area- aDoddle – Community Mapping – Making it ‘aDoddle’ to Find Help, Give Help or Connect with Others Locally

Research Opportunity

We were also joined by Stacey Horne, who runs research within Devon Partnership Trust, she left this message to pass on to you all with us:

Devon Partnership NHS Trust Research and Development team feel passionately about sharing research opportunities with everyone that comes into contact with our services, including service users, carers and staff.

One project we have recently supported is the OPAL study – “One-to-one Peer support for family members and friends of patients treated under the mental health act (OPAL) – developing the intervention.” We have helped to identify a variety of carers to generate ideas on how one-to-one carer peer support can be delivered in England. We hope to be involved in later stages of the research where the intervention will be offered to carers.

To find out more about DPT research opportunities or to get in touch with the team, take a look at our website: www.dpt.nhs.uk/research