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Meet the team: #A_Life_Worth_Living

Also:

  • Ros Alstead
  • Jane Fossey
  • Deborah Humphrey
  • Joanne Brooke
  • Siân Rees
It is proposed to set up a community based peer support project for people living with memory problems and cognitive deficits associated with dementia. The proposed aim is to coproduce a life journey pathway for people living well with dementia. The purpose of the project is to develop peer support for patients and matching peer support for family member care givers to address their principle concerns. Dementia is a condition which requires support across the life course of the disease. The NHS does not currently have this offer for patients and their families. The scale of the challenge cannot be met from existing resources. Peer support offers a way of providing an offer within existing resources by leveraging community assets and experts by experience in delivery. Examples of how this has been done are cited below.
The context and backdrop for this proposal includes a reduction in the number of day centres from 28 to 8 across Oxfordshire. There have also been cuts to the sheltered housing domiciliary support and peripatetic place based support; the specialist transport service has been restricted too, which means that even when a patient is eligible for a day centre place there is no longer transport available. The provider trust in Oxford does not yet have a psycho-social support service for people living with dementia.
The project as envisaged will build the capacity of people living dementia using peer psycho-social support with a proven ‘adaptation coping model’ developed by Prof Rose Marie Dröes and evaluated by Association for Dementia Studies at Worcester University.  This is a proof of concept pilot project to test whether peer support is capable of improving wellbeing and health for a constituency of patients with progressive neurological deterioration.
The novel aspect of this proposed project is to combine and innovate from developments elsewhere. Peer support in the manner envisaged has been established in a number of locations in the UK by NHS trusts but this is not a widespread offer to people with dementia. I have cited two examples which you can find in the links added below. I believe that the difficulty in disseminating and replicating peer support and asset based approaches has arisen because of the lack of a peer reviewed theoretical model and an evidence base of its application. This proposed project combines tried and tested approaches together with a peer reviewed and scientifically evaluated theoretical model developed originally in the Netherlands. Innovations in dementia support from the Netherlands are widely acknowledged as having broken new ground. The NHS has, thus far, been unable to deliver similar innovations in care for people with dementia. The proposal to establish a project in Oxford has the significant advantage of the connections which Oxford Health NHS Foundation Trust has developed with Oxford University and with Oxford Brookes University. We want to see if the proposed project is capable of being evaluated, sustained, scaled up and reliably replicated. We want to adapt an innovation from the Netherlands which has been scaled up to 46 locations across the country and see if achieving this scale and replicating the beneficial outcomes is possible in the UK. This project addresses the most significant challenge of delivering support within current cost constraints. The intended project deliverables are to:-
1.) Establish a committed group of initiators and organisers including commissioners, clinical psychologists and community psychiatric nurses to train patients and family care givers in the peer support methodology;
2.) Build the capacity of patients to develop committed peer support and improve their self-care, self-agency and mutual self-help and support;
3.) Monitor, measure, analyse and evaluate from a base line to develop evidence of direct trajectory to patient benefit from psycho-social support activities which would include (among others), cooking and eating together, outings, music activities, craft, art, dancing and adventures;
4.) Develop a battery of repeat tests for improved management of co-morbidities, mood, sleep, hydration, nutrition, dis-inhibition, anxiety and agitation, together with reduced incidence of aggression, panic, and distress by means of peer administered self reporting and interviews with care givers to corroborate evidence;
5.) Engage with GPs, Allied Health Professionals, Social Workers and Social Landlords to develop outcomes based evidence for reduction of acute admission to hospital, repeated re-admissions, premature admission to care homes, unpredicted excess deaths, missed appointments, injuries, slips and falls. Engage with local university institute and community provider trust to develop health economics evidence and rigorous reporting of efficacy, effectiveness and efficiency for peer support interventions. Engage with CCG and commissioners to achieve sustainable continuation.
Work completed so far includes:-
a.) A poster presentation with assistance from Oxford AHSN. The poster was entitled: ‘A Life Journey Pathway for People Living Well with Dementia;’
b.) A community workshop with invited local patient coproducers, care givers, clinicians, allied health professionals, voluntary sector organisations and guest Patient experts by experience from Pennine Healthcare NHS Foundation Trust and Kent and Medway NHS Trust where peer support projects have been already been established;
c). Visits to established peer support groups EDUCATE  in Stockport and ‘Forget-me-nots’ in Kent;
d.) Dissemination of a peer support Workbook developed from evaluation of established ‘MeetingDem’ peer support groups in Poland, Italy, Netherlands and UK;
e.) Initial scoping and coproduced feasibility assessment in the Oxford cohort of NHS Leading Together programme in partnership with Oxford Health NHS Foundation Trust (Ros Alstead, Jane Fossey and Deborah Humphrey) and Oxford AHSN (Nikki Bromwich and Siân Rees).
I have recruited two professionals who might help to shape this bid. There may be matched funding available from NIHR for the research and evaluation element. There is the possibility of a community venue available at low cost which is equipped with all suitable and necessary amenity including level access; secure access control; disability adapted toilet; kitchenette; and an outdoor area with communal gardens. If this bid to the Q Exchange Fund is successful the resources can be applied immediately without any significant barriers or delays in establishing a pilot project.
The following assumptions have been included in this proposal:-
i.) That the funds are hypothecated and applied solely to meet project, travel and volunteer expenses;
ii.) That the PPIE lead for Oxford Health NHS Foundation Trust provides the link between community and clinicians;
iii.) That committed ownership and leadership support for the project is developed through the board at Oxford Health and that both the CEO and Director of Nursing allocate the necessary time and resources;
iv.) That the venue identified can be obtained at no cost or low cost;
v.) That existing links into the voluntary and community sector organisations can be developed to support this pilot.

How you can contribute

  • Please read this report commissioned from Joseph Rowntree Foundation and drafted by Mental Health Foundation: https://www.jrf.org.uk/file/42955/download?token=CsxzHN7n&filetype=summary
  • Please also read about the Dementia Engagement Empowerment Project (DEEP) to find out about other user led groups pursuing coproduction to configure psycho-social support around their needs. The link to their website is here: http://dementiavoices.org.uk
  • You can read a scholarly article written by Prof Dawn Brooker at Association for Dementia Studies on the Adaptation Coping Model originated and developed in the Netherlands by Prof Rose Marie Dröes here: https://www.emeraldinsight.com/doi/abs/10.1108/WWOP-12-2016-0039
  • To see an example of psycho-social support implemented in the UK by Pennine Healthcare NHS Foundation Trust using peer support led by experts by experience please click here: http://www.educatestockport.org.uk
  • You can also read about another UK implementation in the NHS of a development involving peer support here: https://www.kmpt.nhs.uk/get-involved/forget-me-nots.htm

Comments

  1. This is really thorough work, and I enjoyed reading your bid, Larry. I was about to ask you about the scope of the project in light of the value of the bid, but I’ve just seen the following in your reply to Johanna: “To be really clear about this effort I have to state that even if successful with the maximum award of £30,000 it would be barely sufficient to fund volunteer expenses and incidental costs for a brief period. This is why I’m framing this as a short proof of concept demonstration”. Could you please clarify what ‘short’ is and summarise what the proof of concept would entail and what you would hope to have as an output? Sorry if you’ve already detailed this, but you’ve provided so much information and references that I think I’ve gotten lost somewhere along the way! 

  2. New Economics Foundation, NHS England and The RSA have a new joint intitiative and have set out eight principles for future health and care systems: https://www.thersa.org/discover/publications-and-articles/rsa-blogs/2018/05/8-principles-for-future-health-and-care-systems

  3. Here is a link to the call for evidence by Lord Darzi: https://www.ippr.org/files/2018-02/darzi-review-call-for-evidence-180219.pdf

    This is an opportunity to position Peer Support within the review of Social Care being conducted. To see the interim review produced in April please click here: https://www.ippr.org/research/publications/darzi-review-interim-report

    1. Hi Larry

       

      Thank you for sharing these links

      kind regards

       

      Hilda

  4. National Voices, an independent charity umbrella organisation will launch a Peer Support Hub in January 2019: https://www.nationalvoices.org.uk/news-media/news-item/peer-support-hub-announcement

  5. Great idea. I think you could further strengthen it by integrating further co-production - why are only professionals designing and delivering the peer support training. Adding the perspectives of experts by experience, peer workers or those with or caring for those with dementia into the team would increase the likelihood that the intervention will make the difference the carers and people with dementia want to see.

    1. Hi Anne,

      Thank you for writing to me about the proposal and about Coproduction.

      This project has arisen from following the first Q Lab on Peer Support. I am a patient and I have MCI which may develop with further symptom progression as incipient dementia. I am a member of Young Dementia UK and involved in a Coproduction group hosted by them called PACE; this stand for Patients, Advocates, Consultants and Educators.

      Much of this proposal comes from being part of this group. We coproduced aposter presentation which we spoke about at events organised by Oxford Academic Health Science Network. PACE members also coproduce training and workshops for nurses and allied health professionals at Oxford Brookes University.

      It is estimated that approximately 30% of patients with dementia live alone. Without family member care givers this group become increasingly isolated. Peer Support is the answer. Patients living with dementia often cannot be sustained well in their own homes. Premature admission to care homes could be prevented and most repeated acute re-admissions could be prevented with a care pathway across the entire life course of the disease. What has been missing has been a care model that works which can also be delivered in partnership with patients and care givers in Coproduction. We found just such a model in the Netherlands. This has also been successfully implemented in Italy and in Poland. We have visited sites where the model has been used and we have seen this coproduced work scaled up to 48 locations in the Netherlands.

      The question is can this be made to work in the UK? This proposal is asking for some modest pump priming money to get the model implemented in Oxford. If a coproduced Peer Support project demonstrator works here then it is possible that commissioners will want to fund further Peer Support projects to sustain use of this model elsewhere.

  6. Guest

    Hilda Campbell 2 years, 6 months ago

    Hi Larry

     

    I think this is a great idea, and would like to say I am happy to help in any way I can around working up your full application and anything else which maybe of use

     

    Hilda

  7. Laurence, Good news about the new EU funding. Have you been able to confirm any of you project assumptions? Regards Tom

  8. If you read back through the conversations threads and comments to the very beginning of this proposal, you will read about the Adaptation Coping Model developed in the Netherlands by Prof Rose Marie Dröes from the Volks Universiteit Amsterdam.

    The following link takes you to the announcement that an EU funding stream has now been made available to cascade and implement best practice in Dementia practice here in the U.K.: http://www.evidentlycochrane.net/social-living-models-dementia/

    The Cochrane Collaboration is an organisation which promotes and disseminates evidence based interventions in Health and Social Policy.

    Evidence is now emerging that Peer Support and capacity building with families and individuals affected by dementia shows considerable promise in constraining demand on service while, at the same time, delivering tangible and valuable wellbeing outcomes and benefits for patients.

    If you are as convinced as I am about the merit of this project proposal, about the evidence base, about the feasibility, and about the direct trajectory to patient benefit please would you pledge your support by clicking on the button on this page.

    THIS PROJECT WILL NEED YOU TO PLEDGE YOUR SUPPORT BY CLICKING ON THIS BUTTON NOW!

  9. Great kick off meeting with the core team in Oxford. We created a first draft submission. Much of our attention focusing on the benefits of Peer Support in building individual and community resilience: https://www.thinklocalactpersonal.org.uk/Latest/building-peoples-resilience-and-social-connections/

  10. Sustaining people well in the community and keeping them out of hospital is essential to ccontrain demand on acute services and residential care. Coproduced peer support and psychosocial interventions help to manage common co morbidities and reduce the need for prescribing medicines implicated in this study: https://www.thetimes.co.uk/edition/news/everyday-drugs-raise-the-risk-of-dementia-cz58cwb55

  11. Read this paper in support of the biopsychosocial support model which is ideal for sustaining people Living well with dementia. The evidence base is strong. The literature references abound. What we need to do is provide health economics justifications: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(18)30165-2/fulltext

  12. Fantastic innovations in digital records for people with long term conditions have been developed. This could easily be the foundation for a Life Journey Pathway for People Living with Dementia and the key to a life worth living instead of a long slow goodbye: https://theprsb.org/standards/dcsp/

  13. Dear Laurence,

    thanks so so much for putting such a great idea forward. Living well with dementia is such a wonderful focus.

    I can see that you think 30k would only achieve a proof of concept, which seems realistic to me. Would it be helpful to help people looking at the bid see exactly what you think is possible within this financial envelope? Also could you seek match funding from other sources too, other than the NHS?

    Could the learning from a small specific set of PDSA cycles be captured in a vlog to inspire others? I’m sure you’d get lots of interest and it would help to build the case for scaling up.

    Good luck with it going forward.

    Best wishes

    Anna

    1. Dear Anna,

      i think the PDSA worked examples is a good approach and I will get busy with it. I will post another reply when I’ve had the chance to develop a way of doing this which justifies the investment. Seeking match funding is a tricky proposition. All the voluntary and community sector organisations are fishing in the same pool and the environment for applications to grant making charities and trusts is incredibly competitive. Successful applications usually go to existing charities or groups which are incorporated or to organisations with a constitution and a board of trustees and, at present, my project does not have any of these. However, if I were able to convincingly make the health economics argument and provide evidence of a compelling return on investment then the ideal situation would be getting the CCG to commission the service. I’m looking at examples that will show the way and found this from Kensington and Chelsea:https://www.kcsc.org.uk/news/social-return-investment-report-released?utm_source=National+Voices+Supporters+and+Stakeholders&utm_campaign=1ffa0833d8-EMAIL_CAMPAIGN_2017_10_23&utm_medium=email&utm_term=0_25bfb6e675-1ffa0833d8-224332593

  14. This project is designed to sustain people well so that repeated re-admission to acute or community units can be minimised. If you look at the event linked here you can access a new related transfer of care Improvement and tracking toolset: http://www.workcast.com/register?cpak=2161887629004080

  15. £30k is a dribble and will only be enough to fund the volunteer expenses and incidental costs without which any peer support effort cannot be lubricated. Matched funding will be required. Investment from the NHS community provider trust, Oxford Health. I have no illusions about these difficulties.

  16. Hi Laurence, this is a great proposal and works on the values and principles I think are needed to drive our system forward into the future. The focus on dementia is much needed - after being involved in the Transform Ageing project, I discovered that there is a real gap in the support for carers and family members to understand the journey ahead of them - and that by addressing this you could really help reduce carer burn out and therefore contact with the health system. My only question would be one of practicality - will £30k really achieve all you wish to achieve above?

  17. Hi Laurence, The basis for the idea is extremely good and you have quoted a lot of evidence from a various sources. The world is looking for more and better ways that we can support and help both patients, families and carers for people suffering from the awful disease. The basis of peer support that you are suggesting is a great way to go and as Helen has pointed out there are various previous projects from which you can gain experience. I am unfortunately not knowledgable in this specific area but from a generic patient engagement idea what you might benefit from is trying to get to people before they develop dementia symptoms that are extreme and ask them about how they want to be looked after. You could seek a group of patients and ask them to make the assumption that one day they will develop dementia and ask them the same question sets and this could be the basis of a set of suggested plans from which people could select a pathway and care plan that would best suit there needs.

    I wish you well with this project and think you should get as many people as possible to make a commitment to this that you can.

    Good Luck, Jono

  18. Dear Laurence, this looks like a great proposal that can build on existing work and move us into the future. I can think of various people that might be very interested in what you are doing here and would like to share their experiences with you.  From an OD perspective I think the communities of practice and learning networks approaches might be useful for you to think about in terms of how this work can be grown and sustained following the initial funed period. Pamela Fisher  http://www.leedsbeckett.ac.uk/news/0317-help-support-the-development-of-a-new-form-of-professionalism-for-mental-health-services/ . Pamela has been looking at mental health services and her focus has not been dementia specific but I think she will have useful thoughts to share.  Rod Kersh https://www.linkedin.com/in/rod-kersh-469bb482/ is an inspirational and innovative consultant who writes his blog here https://almondemotion.com/ . If you have any issues contacting them or would me to introduce you directly, please let me know. I will also draw attention to your proposal in our SIG.

     

    best wishes

     

    Jane

     

  19. Guest

    Larry Whybrow-Gardiner 2 years, 7 months ago

    Dear colleagues, I’m advertising an evening webinar hosted by Dementia Alliance International which is a global support organisation run by people living with dementia. This is free for experts by experience. There is a charge for professionals. The webinar will discuss the latest OECD report on dementia: https://www.eventbrite.com/o/dementia-alliance-international-7989184543

  20. Thanks for uploading your project idea Laurence!

    Do you think you could share some more comments with us on the project - for example, could you summarise the expected strengths and challenges of the proposed model? Would you look to replicate the model or adapt it? And if you would seek to adapt it, do you have a plan for that or are you looking for support from the Q community to brainstorm this?

    1. Hi Johanna,
      Thank you so much to writing to me and for your very kind offer of support. I appreciate you very much for wanting to help.
      There has been a wealth of feedback from Jonno Broad and from many other Q Community colleagues. I don’t have a back office. I’m simply a lay member of the community and a singleton patient. To incorporate all the helpful advice received and to shape the bid by including it all is beyond me.
      This bid originated in the AHSN hosting of NHS Leading Together. I was in the Oxford cohort and my partners were Nicki Bromwich from AHSN and Ros Alstead from Oxford Health. At the moment I am working with the PPIE lead at Oxford Health and her name is Donna Mackenzie. I am also trying to collaborate with the Older Adults lead and her name is Jane Fossey. Additionally, Joanne Brooke from Brookes University has expressed interest.
      To be really clear about this effort I have to state that even if successful with the maximum award of £30,000 it would be barely sufficient to fund volunteer expenses and incidental costs for a brief period. This is why I’m framing this as a short proof of concept demonstration. I’m simply proposing running a pilot to see if sufficient evidence will justify investment. Even running the pilot is not something I can do alone. I’m happy providing peer support myself. I’ve had some experience. I am a patient and I work with patients. I’m completely out of my depth with project management, evaluations, report writing and anything more than petty cash accounting.
      The eventual goal would be to see if the evidence is sufficiently compelling and complete to justify asking for the project to be commissioned as a service. At this point I would be asking Oxford Health to sustain funding and running the service and for the CCG to Commission it as an outcomes based contract.

      1.) The strengths are:-
      that this has been demonstrated successfully elsewhere;
      there is a model and and a methodology that works;
      there is a toolkit and workbook for starting up a service;
      there are families affected by dementia who have no support;
      this is an assets based approach which develops patients and care givers as assets.

      2.) The weaknesses are:-
      that the NHS and social care seem incapable of working together;
      everybody has a day job and this represents extra work for busy professionals;
      this isn’t included in anyone’s job description;
      there are risks and the culture is risk averse;
      if the top level leadership pay lip service and do nothing it will fail;

      3.) The opportunities are:-
      pump priming money for a proof of concept;
      a free or low cost venue with all amenity in place;
      patients an care givers as experts by experience and peer support assets;
      a PPIE lead working on a proposal;
      a research academic offer to evaluate and write up;
      the Q Community available for dissemination;
      the Association for Dementia Studies know of our interest and may invest some support;
      match funding opportunities requiring formal bid skills to access NIHR money;
      interest from voluntary and community sector.

      4.) The threats are:-
      lack of any formal bid writing or report writing skills;
      lack of any project management skills;
      lack of social capital and capacity;
      lack of a vehicle e.g. charitable status, CIC incorporation or shelter from a larger organisation;
      voluntary and community organisations compete directly for funds from charities and grant making trusts.

      I hope that I haven’t put you off. This is a shot in the dark and there is no guarantee of success. The AHSN are the go-to for innovation and adoption of novel ideas. I’m in a process. It is competitive. There may be many more far better ideas. The real challenge would come from being successful.
      Regards, Larry

    2. Dear Joanna,

      A few weeks ago I particpated in a workshop hosted at the Health Foundation; the workshop was entitled Liberating Structures. All participants had the opportunity to try out case study examples and real life worked examples using a selection of the structures in this methodology. I have been using the methods which l learned to subject the project ideas to some rigorous road testing, examination and scrutiny.

      The principal strength of the Adaptation Coping Model (A.M. Dröes et al, Volks Univesiteit Amsterdam), lies in the proven scaleability built on leveraging community assets and relying on mobilising self-care, self-agency and better management of the co-morbidities which, in the UK frequently result in inappropriate hospital admission and repeated re-admissions. The prevalence of dementia, the demographic and social conditions and the similarities between the UK and the Netherlands are sufficiently aligned as to assure the usefulness of at least trying to adapt to the model to local conditions here. Dutch communities in 46 locations from rural towns and villages to urban and inner city settings show that there has been a universal applicability. Evaluations from Italy, Poland and the UK have shown promising results.

      The principal challenges include demonstrating efficacy, effectiveness and efficiency, this principally arises because we lack a control situation for comparison. We can’t compare this approach to other services because those services in the UK have largely been closed, restricted or withdrawn. Essentially I see this as a proof of concept based on a ‘preventative spend to save proposition’ with the return on investment demonstration coming from downstream savings.

      The other major challenge comes form sustaining a project past the proof of concept stage. If the Health Economics argument is not sufficiently compelling then getting the service established as a commissioned activity by CCGs will fall at the first hurdle. Even if rigorously produced evaluation evidence is available, the return on investment has to be quite high to justify investment  However, in Scotland, the Scottish Dementia Working Group has successfully convinced the Scottish Parliament to directly grant fund an application of peer support services for the last ten years. They have a different Commissioning system in Scotland but they have developed the Health Economics proposition convincingly

      Personally, I think that the asset based approach is the right way to go for community services anyway. I also think it is the current direction of travel in social and health policy. With a good evaluation built into the co-design of this proposed intervention at the beginning I believe the prospects for producing the necessary evidence are good and that this will eventually prove to be a service which can be commissioned. The government’s dementia czar, Professor Alistair Burns gave the opening address at the launch of the Young Dementia Network with an appraisal of differing approaches to psycho-social support and he is backing asset based peer support approaches.

      The evidence from Kent and Medway NHS Trust (R.Guss and K.Oliver et al) is that a dedicated Coproduction partnership in capacity building and in psycho social support requires a small amount of continuation funding to meet volunteer expenses and back office secretariat function. The evidence from Pennine Healthcare NHS Foundation Trust has been that the EDUCATE support groups has been sustained for over ten years and become an award winning effort that has transformed the entire service delivery model for people with dementia; consultant led clinics have been scaled back and a very high proportion of dementia assessments are now carried out in people’s homes by CPNs following GP or social services referrals.

      I’m a lay person and not a clinician. I was involved in evaluations of a variety of approaches and co-opted to assist with these at the Association of Dementia Studies in Worcester. There is much that I don’t know. Im not a career academic either. What I do know is that progressive neurodegenerative diseases need a service across the life journey of the disease. I am currently assisting in a coproduced evaluation of Integrated Personal Commissioning funded by the Department of Health and Social Care. The government’s announcement to scale up the provision of personal health budgets makes the Health Economics proposition more positive because individuals will be able to purchase the psycho-social support they want and configure it to their own needs and circumstances.

      My experience comes from volunteering with Young Dementia UK and from the direct lived experience of stroke sequilae diagnosed at the Warneford Hospital as MCI with the possibility that my own symptom progression may eventually include incipient dementia. Some people do progress to dementia and I hope that I don’t progress too far or too soon. I have also undergone a differential diagnosis process to investigate for functional distresses like depression and anxiety. A recent FMRI found an infarct in the cerebellum which probably accounts for present memory difficulties. Eventually, one day, in Oxford where I live, I would like to be able to purchase a service like this based on peer support and the model described in my proposal.

      For this proposal to progress to the next step of evaluation I will need a committed collective of initiators prepared to help and prepared to aback the idea. I don’t have salary cover. I fund activities from my old age pension. I don’t have a back office.

      Addressing your questions and evidencing them will take time and effort. Please watch this space. I appreciate your interest in this project. Please disseminate among your connections.

      Regards,

      Larry Gardiner

  21. Hello Lawrence

    I am the MD of a MH Trust in Devon.

    I enjoyed reading about you project and your plans.

    As I was reading about it I was reminded of the memory café consortium we have in Devon. There are 60 of these across the towns and villages of Devon. They are run by volunteers and meet regularly. Taken from their literature, "They provide a stigma free environment in which those with dementia and their families may find laughter, education, companionship and above all peer support" You may already be very aware of this but would be happy to put you in contact with the lead for this ( not a Q member) if talking to him might help you develop your idea.

    I thought your submission might be enhance by recognising that a number of people with dementia get inappropriately admitted to hospital, improving peoples education and peer support should impact upon this? Its such a big issue for the NHS, I think weaving it into your benefits for people most importantly but for the system would add further value.

    Good luck!

    Helen

    1. The value of Peer Support in bereavement is well documented. Family members affected by dementia talk about feelings of grief while they are caring for loved ones and the value of Peer Support for care givers being vital to continue caring: https://www.independentage.org/good-grief-older-peoples-experiences-of-partner-bereavement

    2. What I want to do is integrate novel approaches to peer support and asset based self-efficacy, self-agency and self-care models in this project such that it is situated within an innovations community which will sustain it. Here is a link that provides a context to this:http://www.oxfordahsn.org/clinical-networks/dementia/dementia-priorities-2016-18/

    3. Guest

      Larry Whybrow-Gardiner 2 years, 7 months ago

      Hi Helen,

      i looked at the website link and have explored their website resources. I’m very impressed that there are so many memory cafés in Devon; far more that there are in Oxfordshire. It is wonderful to have something to aspire to.

      Larry

    4. Hi Laurence

      The website address is www.dmcc.org.uk...this has more info and contact details

      Kind regards

      Helen

    5. Dear Helen,

      please do feel free to put me in touch with the people you mentioned in your message. Almost every acute trust in the country is occupied and stretched because on any given day over two thirds of admissions are over the age of fifty and almost three quarters of admissions who are over the age of sixty five result in delayed transfer of care. One third of this last group are very likely to struggle with cognitive disorders whether diagnosed or not. The most likely destination for those individuals over the age of 75 will be an extra care facility or a care home if they are unable to be sustained well at home.

      I think your suggestion to include this in the business case for the next stage of this bid is a good one. If you have anecdotal evidence from your practice or from your area, or hard data for which there is evidence which supports this proposal I would very much like to have it.

  22. Please look at the 4PI standards for Involvement and Participation which set out a framework for engaging patients in Coproduction for this project:https://www.nsun.org.uk/faqs/4pi-national-involvement-standards

  23. The Green Paper  on Health and Social Care published today calls for radical approaches to address the needs identified in this proposed Q Exchange project bid.

    1. The latest NHS guidance recommends innovation in Dementia Pathways to ensure best use of finite resources. Peer Support fits the bill. Innovative pathways across the life course of the disease also fits the bill: https://www.england.nhs.uk/wp-content/uploads/2018/01/implementation-guide-and-resource-pack-dementia-guide.pdf

    2. People with dementia who have created a national peer support user led working group will be opening the 2018 Alzheimer’s Society national conference: https://blog.alzheimers.org.uk/inside-the-society/people-affected-dementia-opening-alzheimers-society-conference/

    3. Colleagues who are interested in the potential for Peer Support in building the capacity of care givers might like to invite them to contribute to this survey: https://www.surveymonkey.co.uk/r/StateofCaring2018

    4. I’ve been looking for a source which helps us to frame Peer Support in terms of a framework that integrates better outcomes within integrating health and social care organisations: https://www.local.gov.uk/icbo

    5. £30k is pump priming funds only barely sufficient to meet a brief period of volunteer expenses and incidental costs for a pilot proof of concept project. However Donna MacKenzie from Oxford Health NHS Trust is working up a proposal as we speak and I will be meeting with her to review this on 27th April. Her present work is the next stage in the process. An evidence base from this proof of concept project will be required in order for peer support along these lines to be commissioned and sustained. Similar peer support have been at the heart of small scale commissioned local services. The novel nature of this proposed project is to introduce a proven peer intervention model which has successfully been scaled nationally in the Netherlands and regionally in Poland and in Italy. That will require a system wide change agency requiring resources which can only be justified by evidence of both impact and a significant return on investment. Oxford Health is in discussions with the Association for Dementia Studies and has expressed an interest in enlisting their assistance with implementing a peer support approach along the lines proposed in this bid. A consultant led and line managed service to patients and carers has an unaffordable cost profile. A peer support service for both carers and patients based on a proven ‘Adaptation Coping Model’ with support from clinicians and mobilising committed community support delivers services with a scaleable, sustainable cost profile. Each implementation across the Oxford Health geography leveraged more trained and supported community assets including patients and their care givers themselves.

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