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Meet the team: Think Kidneys, Think Peer Support

Also:

  • Richard Endacott Peer Supporter
  • Shaila Hussain Peer Supporter
  • Dr Martin Dempster Academic (Health Psychology)
  • Hannah Chalmers, National Voices

The Background

People with advanced kidney disease need to make difficult decisions about the type of dialysis they will need (such as a kidney machine) or to make a decision about whether to have dialysis at all. For some people this decision will also include discussions about kidney transplantation. There are around 60000 people in the U.K. who have kidney disease that requires dialysis or a transplant. This group of people will have made these difficult decisions but then need to make significant adjustments to their life, including changes to diet and management of medicines as well as coping with the impact that dialysis or a transplant has on their life quality, such as employment, holidays and relationships with family or friends. All these adjustments are made easier if there is open communication and shared decision-making between staff and patients and their families.

However a recent Patient Reported Experience Measure (PREM) survey carried out by Kidney Care UK (with over 11000 responses) found that shared decisions about care was one of the most poorly rated aspects of the renal (kidney) service offered in the UK.  The results can be found here

https://www.thinkkidneys.nhs.uk/ckd/wp-content/uploads/sites/4/2018/04/PREM-report-final-2.pdf

Some kidney units offering good emotional and psychological support from health care professionals, including counsellors. Some kidney units have invested in a programme of peer supporters who have been trained in-house whilst other kidney units and individuals have relied on the expertise and lived experience of ‘Advocacy Officers’ employed by charities such as Kidney Care UK.

 

The Challenges

Peer support in kidney care is patchy. Peer supporters with lived experience of kidney care are not being fully utilised in Trusts (Taylor 2016). Peer support offered by charities is extremely beneficial but the kidney community has not come together to learn from the charities and each other.

One of the issues seems to be around patients, families and health care practitioners not knowing what is available but crucially not understanding the beneficial impact of peer support.

 

The Proposed Solution

We are proposing a quality improvement project which is co-produced with a project team that includes people who have lived experience of kidney disease and are peer supporters. This team already has experience of co-producing research and QI projects (see attached file).

The team will plan the project according to the following aims and objectives:

 

Overall aim of project

To increase the number of people with advanced kidney disease who receive peer support. This will be done by developing and implementing an evidence-based intervention that focuses on overcoming the barriers to offering and accepting peer support. 

Secondary outcome measures
To (1) develop and describe the intervention in detail, (2) check actual exposure to the intervention, and (3) describe the experience of those exposed, by undertaking a process evaluation  (Hulscher et al 2003).

Objectives

To convene a project team that will co-produce the project

In one Trust undertake surveys with patients and staff, and to undertake focus groups with peer supporters and clinical staff to understand the reasons for good and poor uptake

To work with the Peer Support Hub to plan an intervention that will increase the uptake (based on evidence) 

https://q.health.org.uk/news-story/building-an-online-evidence-hub-for-peer-support/?dm_i=4Y2,5N9H0,E48BMD,LYGUH,1

To roll out and sustain the intervention in one NHS Trust

To identify the drivers and barriers to intervention roll-out and sustainability in one NHS Trust

To spread the intervention in the future (with further funding) to other kidney units and to other long-term conditions

Summary 

An exciting, innovative, co-produced project that will improve our understanding of why peer support is not always taken up in one specific area of need, but has the potential to increase the uptake of peer support in many other long-term conditions.

How you can contribute

  • Much work has already been done with the QLab Peer Support, and it is important to use and further evolve the learning from the QLab. We will work with the HF Peer Support Hub, who are creating a "trusted and authoritative online hub that will collate, curate and categorise the plethora of evidence and tools" on peer support.

Comments

  1. Great news martin, I have added you to the team. I will send you an outline of our proposal via email

  2. Guest

    Nicola Thomas 2 years, 1 month ago

    Thank you very much Martin for your most helpful comments. Wouid you like to join the team? If so I will send you the draft submission and I can add your name. I will be requesting funds for steering group meetings and a research assistant. With my best wishes

    1. Guest

      Martin Dempster 2 years, 1 month ago

      Nicola, thanks for the invite. I am happy to join the team or contribute in any other way that might be useful.

  3. Guest

    Martin Dempster 2 years, 1 month ago

    This is a much needed piece of work. Peer support works well in other areas and we have published some work on this in oesophageal cancer: https://academic.oup.com/dote/article/30/10/1/4001430

    However, my interest moves beyond the academic as I recently had to make the decision about dialysis myself and have first hand experience of how useful this initiative would be. Happy to contribute my perspective to your project.

  4. Guest

    Nicola Thomas 2 years, 1 month ago

    Does anyone have any idea how I can be in touch with a rep from the HF peer support hub? I have tried to be in touch directly with National Voices but no luck.

  5. Hi, Its really interesting to hear that peer support is so common in kidney care - it's an area I'm not familiar with. You say you could gather learning for other long term conditions - have you looked at implementations in other areas for their learning? We've found that there is no one role for peer supporters, and that can make it difficult to retain the values of peer support, such that it then gets lost in the existing system. Do you think it's the same in kidney care? Are all these peer supporters providing mutual and recriprocal support?

    1. Guest

      Nicola Thomas 2 years, 1 month ago

      thanks so much again Karen. Agree it’s very important to learn from others and also the focus groups will explore what works and what does not work. I will amend the proposal to make it clear.

    2. Another question - you say you're going to have focus groups etc to look at the poor uptake of peer support. Could you turn that around and focus on what works well?

    3. hi Nicola -

      Sorry, yes - other LTC - are the challenges you're identifying unique to kidney care or have other LTC faced and overcome those challenges? Mental health; stroke; HIV; are all areas that have established peer support. You're suggesting that you will be able to provide learning to other areas, but have you also looked at what they've done to see what you can learn from them? I see you're looking for information about contacting National Voices - they'll be able to help with that (I'm assuming the Q Lab team will put you in touch).

    4. Guest

      Nicola Thomas 2 years, 1 month ago

      Thanks so much for your comments. I have answered below

      Hi, Its really interesting to hear that peer support is so common in kidney care - it's an area I'm not familiar with. You say you could gather learning for other long term conditions - have you looked at implementations in other areas for their learning?
      Not quite sure what you mean here...other LTCs?

      We've found that there is no one role for peer supporters, and that can make it difficult to retain the values of peer support, such that it then gets lost in the existing system. Do you think it's the same in kidney care?
      Yes that’s very much the case, and I think that’s one of the reasons that peer support outcomes are diluted

       Are all these peer supporters providing mutual and recriprocal support?
      This is another issue- it is very patchy. The reason for this study is that It is not acceptable that  peer supporters are trained but then never utilised.

  6. Really interesting project – and great to see that it’s drawing and building on some of the Q Lab’s peer support work. Can I suggest you share this on the Q Lab’s online space, Nicola, for input from the Lab participants? Also, have you considered using this as an opportunity to evaluate the peer support intervention in other ways, in addition to measuring the number of people engaging with the service as your main measure? (Please correct me if you’re already planning on doing this and I got the wrong end of the stick!)

    1. Guest

      Nicola Thomas 2 years, 1 month ago

      no probs Hawys ...all sorted now!

    2. Hi Nicki - so sorry I didn't get back to you - I hadn't actually realised you'd replied until Sarah told me that she'd e-mailed you the details. (I though I'd automatically receive an e-mail notification if someone replied to a comment I'd written... but no such luck as I didn't tick the box to "notify me"!)

    3. Guest

      Nicola Thomas 2 years, 1 month ago

      Dear Hawys

      Any idea about how I can be in touch with someone from National Voices about the peer support hub? I have tried to email directly but no luck. Thank you!

    4. Guest

      Nicola Thomas 2 years, 2 months ago

      Thanks so much and apologies for the delay in replying but I was away last week. They are really great ideas thank you. I am just catching up after my holidays but will do as you suggest in the next couple of days.With my best wishes and many thanksNicki

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