Q Exchange
Carers and peer support
- Shortlisted idea
- 2018
Meet the team: Carer Reporters
Also:
- Gary Copitch, People's Voice Media;
- Ruth Hannan, Salford Carers Centre
Identified challenge:
How many of the ideas for Q Exchange actually involve carers? How often are carers included as an afterthought: “…. and carers”? Or how many still use the word ‘carers’ to refer to paid care workers?
Carers are a disadvantaged and excluded group and it is time that service providers and commissioners took greater notice of their views.
While it’s generally accepted that carers, like service users and patients, should be involved in health care, including their own and the person they support, carers still say they are excluded. They suggest that services hide behind confidentiality, that they have little choice but to continue caring, and that they are increasingly stressed and using health care services themselves (Carers UK, 2017). A caring role is often associated with poverty as carers give up work to support their family member (Aldridge & Hughes, 2016). Additionally and anecdotally, carers lives can be shortened significantly by the stress of a caring role. This all has further implications for the wellbeing of the person they support, the wider family, and health services.
A potential solution?
Peer support has been shown to improve outcomes for the people receiving and offering support as well as the wider organisation (Graham & Rutherford, 2016; National Voices, 2015). However, although it is becoming increasingly available to service users and patients, there is little evidence around peer support involving carers (Burnell, 2009).
While carers groups have been a valued part of carers support since carers first started self-organising, carers peer support in the form of paid or voluntary peer supporters is still relatively rare. Very few carers would use the phrase ‘peer support’ to describe their groups. With few examples to draw from, carers don’t know to ask for a peer support service for themselves.
Consequently, although service providers might start to consider whether peer support could be extended to carers, with little evidence of carers’ needs or opinions, it is unclear whether this is a useful avenue to explore.
The proposal:
This project therefore seeks to uncover carers views of peer support, using a Community Reporter approach of story collection to capture and analyse carers’ stories related to peer support.
The Community Reporter approach has been selected to ensure the authenticity of the stories. This participatory approach will enable the group of carers to influence further action, encouraging their involvement in quality improvement activities.
The project will train up to 12 carers as Community Reporters to capture stories from other carers, service providers and commissioners in their local areas. The group will receive awareness training about peer support and discussions will be used to inform conversation starters for the interviews. The resulting stories will be co-curated by the group to ensure the authentic story is being represented and key insights identified.
The results will inform a conversation of change event to explore how this experience can best be used to inform future service design of support for carers. Results of the conversation of change event, as well as the analysis, will be shared with the broader Q network.
What are the outcomes?
The outputs will include a report and conversation of change event to disseminate carers’ views on the value of peer support. This may include opinions on the broader topic of carer support. The knowledge and awareness of the support that carers value can be taken by services and by carers to influence quality improvement. This is a new contribution to knowledge not available elsewhere.
Up to 12 carers from across the UK will be trained as citizen reporters, with personal outcomes including increased confidence and new skills, in addition to knowledge of peer support and carers’ views. The group will be informed about Q, and invited to join the membership if appropriate. Similarly, the interviewees will be invited to form a network of carers interested in influencing and research on this topic.
Information about and from the project will be shared with Q members through both the peer support group and peer support hub to be developed by National Voices. The conversation of change event will be open to Q members.
Who is involved?
Ruth Hannan was instrumental in developing and delivering Triangle of Care for the Carers Trust, before recently moving to her post at Salford Carers Centre.
People’s Voice Media, also based in Salford, specialise in gathering, curating and mobilising stories of people to provide insight that influence and inform people and organisations. They will train the Community Reporters, coordinate the curation and analysis of the interviews, and coproduce the conversation of change event.
Karen Machin has delivered peer support training nationally for nine years and has been involved in research around carers of people in secure services in both Scotland and England.
We have support from carers organisations across the UK.
How you can contribute
- come and talk to us at the Q Exchange event
- please add your support via the link
- comment on this proposal and help us to improve it
- share your ideas and knowledge about existing carers peer support
Reviewer feedback
This is a great project because…
This project builds on the work of the Q Lab, and the team have engaged well with the Q community in the development of their proposal. We liked the focus on carers and found the proposed approach of using community reporters compelling.
By the time of the event we encourage the project team to think more about…
The project is explorative in nature which might mean it is hard to define success measures at this stage - further thinking about how they will share the learning they generate and make it relevant beyond the specific group they are targeting will strengthen the proposal.
Comments
Jenny O'Hara Jakeway 24 Oct 2018
Hi Karen,
I understand you are looking for Carers in Wales who might be interested in this project. I know a couple who might. Could we speak?
Karen Machin 18 Sep 2018
Thank you Anne - please do stay in touch. Will you be in Birmingham?
Karen Machin 18 Sep 2018
Please do! Ruth and I will both be there.
Ann Innes 18 Sep 2018
Yes - will make a point of saying hello :)
Karen Machin 18 Sep 2018
Voting tomorrow so our last update here. We've now got support from carers organisations across the home nations and lots of interest in getting involved if this project is one of those funded. People are telling us that this project would help organisations to try out a new way of consulting with carers. And that if it works well with this group, the method could be transferred to others. People are also saying they want to know the results of the project including what carers think of peer support. We're keen to make sure this project isn't just a one off with a report that sits on a shelf - that's not how we work. We're active on twitter and also various groups and networks. We'll be sharing it! Looking forward to seeing many of you tomorrow - and hopefully persuading you to vote for us. Thank you to everyone who's commented and supported us, Karen
Ann Innes 18 Sep 2018
Hi Karen - I commented on your proposal at an early stage and am delighted it's been shortlisted. Very interested in keeping in touch with how your work progresses and offering any help that I can.
Hilda Campbell 3 Sep 2018
Hi Karen saw this piece sent by colleagues on twitter maybe of interest https://twitter.com/HandSCAcademy/status/1036568184864817152 if this link doesn't work try https://www.alliance-scotland.org.uk/blog/opinion/open-dialogue-approach-a-carers-perspective-on-why-it-could-be-transformative/ as think helpful to hear perspective of person and their daughter also this link for more info on open dialogue approach https://www.psychologytoday.com/gb/blog/hide-and-seek/201507/open-dialogue-new-approach-mental-healthcare
Kind regards
Hilda
Karen Machin 18 Sep 2018
Thank you Hilda - sorry I've only just spotted your comment. I agree with her that Open Dialogue seems a 'no-brainer', with lots of opportunity to involve family and friends in supporting someone. I do question the difference between the support provided by Open Dialogue and true peer support: the videos of families who've been through the training do sound very similar to the feedback we get from peer support training, about being listened to for example and about healing rather than recovery. It'll be interesting to see the POD project results.
Hilda Campbell 3 Sep 2018
Hi Karen I think its a great idea and think its unfortunate on this occasion there are no postal or e votes as not everyone will be able to take time out to go to Birmingham and I know had I of been there you would have got one of my votes. I am happy to stay in touch and let me know how things go e.g. I have heap materials happy to share which Carers may find useful around creating psychologically safe places in groups, basic one hour stress busters, tips for self care and more, happy to share Hilda
Karen Machin 3 Sep 2018
Thank you Hilda - yes we'll definitely stay in touch.
Karen Machin 3 Sep 2018
Thank you Hilda. You've summarised the variety of challenges faced by carers and the importance of making sure that they have the support they need. You've picked out some key areas for knowledge and awareness such as self harm, suicide, medication, parenting, young carers, and welfare rights, as well as carers' own health and well being. All important areas where peer support could be useful. That's a shame you can't come to the event, or have a postal vote, but thank you so much for your words of encouragement. Please do stay in touch.
Hilda Campbell 3 Sep 2018
Hi It looks as if the project is shaping up really well. I am also glad there is mention of Carers own health and well being which is all too often neglected and overlooked while caring for others. I am sorry if i am repeating what has already been shared, I wonder if identifying with Carers specific challenges they face in their role with someone they love around issues of their mental ill health e.g. Issues of self harm, mention of suicide, what training and support Carers have? e.g. work being done in Cambridgeshire and Peterborough https://www.stopsuicidepledge.org/ which includes a section if you are worried about someone, even offers advice for training, or, what links with community pharmacy as sometimes some medications can have side effects which maybe useful for Carers as well as the person taking the medication to know about, even understanding how different medications support their loved one maybe useful, or treatments which are being offered. Also, its important people realise while they may have things in common with others, every family is unique so its understanding individual family members needs e.g. if their are children in the family and there have been times when a parent e.g. has had to be sectioned and the child has seen this , or through ill health perhaps the parent isn't able to be and do what they want to for their children, how does this affect the child and other parent, given work around ACE http://aceawarescotland.com/ (adverse childhood experiences ) think also there is something around young carers, issues of school or missing school and what support the school can offer and again sadly the challenges if stigma and discrimination children and teenagers as well as adults can experience. There is also all the issues of welfare reform and Universal credit and potential challenges if people don't have access to welfare rights support. Understanding more around the challenges Carers and people with mental distress face makes any intervention offered more effective when solutions are sought together, as say, i am sorry if i am repeating what has already been shared. I am sorry i wont make it down to Birmingham and on this occasion there doesn't seem to be a postal or e vote, however, this is a great idea and i am sure it will receive many votes from this present kind regards
Hilda
Karen Machin 31 Aug 2018
Thank you to everyone for all the help, support and discussions over the last few months. I hope they continue up to the event on the 19th and I look forward to meeting you all there.
Our project has moved towards being specifically about carers who support someone around mental health difficulties. We thought that with only 12 potential reporters we should focus on one area and as both Ruth and I have more experience and contacts in mental health, it made most sense to start there. It's also an area where peer support for service users (patients) is more advanced so we thought providers and commissioners may also be more familiar with the ideas around support and interested in applying them to carers. But even though we're focussing on mental health, we do think that all carers have common themes about what they might find helpful and that the findings from this project would be relevant beyond mental health.
We've been speaking with carers organisations across the UK who want to get involved. We think that will add another dimension to the project as there are slight differences between the home nations and we'd like to know how peer support can contribute.
Please do keep commenting here or contact us directly, and we hope to speak to you at the event
Fran Butler 13 Aug 2018
This is a really interesting project and the views of carer peer support will be very valuable.
I wondered if you have looked at carer support in particular for carers of people with dementia?
Karen Machin 13 Aug 2018
Thank you Fran - always good to hear that people are interested.
We have looked across all conditions, and Ruth has a lot of experience around carers in general.
We'd argue that, across conditions, the challenges of being a carer might differ, but on the whole the things that would make life easier are actually very similar. Whether they are supporting someone with physical or mental health needs, a fluctuating or deteriorating condition, an older parent or younger child, carers want information and support, including financial support, time off, and basics like a named contact. It will be interesting to find out from them if peer support is on that list.
Helen Smith 17 Jun 2018
Hi
Having just been talking to carers for people using our secure services this weekend, I have been reminded of how isolated families can be when supporting members of their families were things have gone very wrong. There is often so much stigma associated with these situations making it difficult to seek support in normal ways. Also having to alter personal and family expectations about how futures may look.
A great project to improve carers experience.
Karen Machin 17 Jun 2018
Thank you Helen, I agree that family and friends of people using secure services face real barriers to getting support. I would hope, if we were to be funded, we can include carers from within secure services.
I was involved in the teams for the research projects in England and Scotland, so I've listened to many experiences, and can see both the need for support and the need to share their stories, which have become hidden through the stigma and requirements of confidentiality.
The toolkit for England is here:
https://www.england.nhs.uk/publication/carer-support-and-involvement-in-secure-mental-health-services/
The report from the Scottish research is here:
https://www.supportinmindscotland.org.uk/exploring-family-carer-involvement-in-forensic-mental-health-services
Samantha Churchward 15 Jun 2018
Hi Karen,
this sounds very interesting and a much needed piece of work, we are passionate about carers involvement within our service, utilising the triangle of care model. Part of our 'Bridging the gap with Peer Support: Secure Services and Beyond' will include carers peer support. We would be happy to be involved in providing outcomes and the evidence base.
Look forward to hearing from you
Sam
Karen Machin 17 Jun 2018
Hi Sam - Thank you for this - that would be great to link up. I've just replied to Helen's comment describing my interest in support for carers of people in secure settings, who I think face specific barriers.
Sarah Taylor-Robinson 14 Jun 2018
I am really interested in this project - I facilitate a carers peer support group and am keen that there are more opportunities for peer support for carers. Our service employs peer support workers - people with lived experience of mental illness and I know what a difference they make. I champion the idea of carer peer support.
I also have been involved in a quality improvement initiaitve where patients carers and staff developed quality standards together and a tool to measure them. Then patients and carers were trained and supported to use the tool and interviewed other patients or carers. It worked really well having carers capturing other carers experiences.
I will be interested to hear the progress of this project.
Karen Machin 14 Jun 2018
Thank you Sarah - your improvement initiative sounds interesting, and I'd love to hear of the learning you've gained around carers interviewing other carers. I'm really pleased to hear of another champion of carer peer support too. Please do stay in touch.
Helen Crimlisk 13 Jun 2018
You raise some very good points Ann, carers are often an afterthought. I’m often challenged by GP colleagues who talk about their history of looking after whole families and remembering records of family members were rubber banded together for easy reference. We seem to have lost that with digital records,
Also I am struck by the evidence that caring for carers can be an important way of improving the quality of care to patients and that many of our carers find themselves at risk of mental health difficulties and in need of services themselves.
Neverthelses there are practical problems. I was asked recently to consider whether our service user (patient) engagement group should include cares or even look at carer engagement and got a very clear steer from the group that these things had to be considered separately as “We need our own space” and “there is such a thing as patient confidentiality you know”
Clearly there needs to be choice and options to enable individuals to make their own decision as to how to work together or not as the case may be.
Is this an issue you come across and how are you dealing with it?
Helen
Karen Machin 14 Jun 2018
Helen, you ask whether carers should be included in the service user/patient engagement group. I'd go back to the terms of reference for the group and look at what it's supposed to be doing. Is the group about being a supportive space for people to discuss their own issues, or is it an influencing group aiming to improve the quality of services? For example, I'm not clear why patient confidentiality should come into a group that's aiming at service improvement.
Karen Machin 14 Jun 2018
Hi Helen, Thank you for emphasising carers' own health and wellbeing - the latest Carers UK study is saying 72% have experienced mental ill health and 61% say their physical health has worsenned, with just over half of carers anticipating that their physical or mental health would get worse in the next two years. ( https://www.carersuk.org/news-and-campaigns/campaigns/carers-week )
Hawys Tomos 11 Jun 2018
Hi Karen. It’s really great to see a bid that draws on the Q Lab’s peer support work and that one of the planned dissemination routes is through the peer support hub. Brilliant to see a Lab collaboration too. Many of our Lab discussions around stories have centred around how to utilise lived-experience and stories to evidence peer support offerings, but using them to feed into the design of peer support offerings was also something that was often mentioned and, I think, widely believed to be a good idea. Thanks for sharing the triangle of care too – I haven’t come across it before but I can see how useful it could be to facilitate conversations between carers and healthcare professionals.
Karen Machin 11 Jun 2018
Thank you Hawys, being a part of the Q Lab has really helped us with this proposal. Gary and I would probably not have met otherwise! And it was good to have that push to combine our experience and think about how to use people's stories for peer support.
Ann Innes 6 Jun 2018
Hi - I think your proposal is a good one. I'm involved in two peer support groups for carers, both running very informally and I would say that participants really understand that what they are getting and offering is peer support. There is a strong feeling amongst participants that they really benefit from peer support because they feel marginalised and disempowered in the professional care (or absence of it) that their family members (as that is usually who they are caring for)are receiving. Good luck with your bid and I will be interested in the outcomes if you are successful
Karen Machin 11 Jun 2018
Thank you Ann, I'm pleased, and reassured, to hear of family members understanding the language of 'peer support'. I've had carers telling me that carers are too busy to provide peer support - and yet, for many years, those same people have been active members of carers groups, which I would call 'peer support'. I suspect there's something around the language, which would be interesting to find out.
I'd love to hear more about your groups at some point. I hope you're celebrating Carers Week!
Caroline M Kelly 17 May 2018
'The problem' you articulated is familiar to our group the Southwest Carers Forum based in Counties Fermanagh and Tyrone in Northern Ireland where we have an integrated health and social care system. As family carers we came together 10 years ago for the sole purpose of being self-advocates and peer advocates for families struggling to access services.not just health but social care, education and housing. Our mission was to represent the independent voice of carers and to seek involvement in planning services, The HSC in NI has been 'a cold house' for us even though in NI since 2009, service users and carers have had a legal right to be involved. Financial or other support for peer advocates has been non existent. We continue to be ignored, our expertise is not recognised and we are seen as trouble makers.
We would be very interested in participating in this project so that our experience can be captured, recorded and perhaps lessons learned. Even if we are not eligible to participate, we will be most interested in the information and recommendations forming the desired outcome.
Karen Machin 18 May 2018
Thank you Caroline. Your experiences sound so familiar. We put the NW England areas because that’s where we’re based but, as you highlight, these challenges are relevant for Carers everywhere and it would be great to reach out further to share experiences.
I’d love to link up somehow and include you. Let’s have a think how best to do that.
Karen Machin 16 May 2018
We're very pleased to welcome Salford Carers Centre and Ruth Hannan to the team for this project. Ruth was instrumental in the national development of Triangle of Care, with the Carers Trust, before taking up her new post with Salford. Link to Triangle of Care is - https://carers.org/article/triangle-care
Karen Machin 16 May 2018
We're still thinking what groups of carers might be involved - or whether to keep that very open. As Joy mentions above, carers of people experiencing mental health problems are one group. On twitter, we're also thinking about families of veterans. Peer support is familiar to veterans as 'befriending'. Would their families want peer support for themselves?
Karen Machin 15 May 2018
HI Joy, Thank you so much for being the first to comment! Your Carers Crisis Line is an inspiring example of peer support in action and it would be useful to think how that might be developed and better supported.
You're right, there are lots of different challenges to developing peer support for carers, and Dorset, with all your experience of recovery work and peer support, has lots of experience around that. I'm especially pleased to hear that the triangle of care is helpful too.
I wonder if carers in other health areas experience the same challenges as mental health carers for developing peer support?
Joy Ford 15 May 2018
I work as a Peer Specialist Carer with the Dorset Mental Health Forum in Dorset, and have been involved since 2012 in the project of co-production and Peer Carer Support. The Recovery Education Centre have two carer courses both co-produced and delivered by a Peer Carer and a professional. Many are poorly attended and at time we have to cancel courses due to not enough attendees. It takes time and I mean a long time to get things out to carers. Few GP surgeries or hospitals have anything up about mental illness Peer support of any kind, apart from psychiatric hospitals and CMHT departments. Mental Health and support available should be more available, same as any other illness.
My husband and I two years ago started a Carers Crisis Line, for carers to call to talk to someone when feeling stressed, we explain we can not change things or give advice, but we can listen empathise and sign post to further help. Why did we start this, mainly because it is often what a carer needs especially at the beginning of a family member becoming seriously mentally ill. A friendly voice that knows what they are going through. Plus everything takes for ever with the formal channels, I'd made the suggestion about Peer Carer support for carers in crisis a couple of years earlier, everyone thought it a good idea, by everyone I mean the professionals, but nothing got off the ground, the guy I was working with to have a course to help train carers, moved on and I lost heart. Everything in mental health takes time, and many carers who have wanted to be involved with being a Peer have moved onto to other things due to training taking so long to come to fruition. This is one of the main reasons there are very few Peer Carers in Dorset. You have to be proactive and get on with doing things yourself, which I do and so have a couple of others. There are carers out there that want to be involved with the care of their loved one and as Peers but you need to learn to fight for yourself. Since being involved with the Triangle of Care in Dorset, carers have been visiting wards in psychiatric hospitals giving carer awareness presentations with professional staff, the presentation was co-produced. We are now working with CMHTs in the community. There has been a change in carer involvement. But carers are often over whelmed emotionally. Last year we held a two Carers Day during carers week, one in East Dorset and for the first time in West/North Dorset a more rural area both had reasonable attendance. This year the West/North Dorset event is over prescribed. Why? because word of mouth between carers in a more deprived area of Dorset where little happens for mental health carers, because it's not an urban area.
Reporters sounds good, but having done a carer survey in Dorset, kept notes of carers stress from phone conversations, visited various carers groups, the negative stories are out there, some due to carers themselves and their expectations of recovery, etc. Others because they have slipped off the radar, and others because of their understanding lack of mental illness and the length of time recovery takes. There are the odd member of staff that exclude carers in here, but most don't. Some how we need to get things out to carers, let them know what's out there, and for them to know they can speak out when things don't go right, rather than being very stoic and British.
I think the biggest fear is money, yet Dorset is busy turning community hospitals into hubs, where everything is under one roof, apart from acute conditions, which will use main hospitals. That's everything apart from mental health, why? Fear of the mentally unwell, yet these hospitals have spaces for Front Rooms or drop in centres for those in need of mental health support, that would cost less than looking for and hiring and transforming a different premises. So I could go on, but I'm just a carer, who lost her son by suicide, due to neglect of the hospital he was in at the time. (Coroners Verdict)
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