Meet the team: #A_Life_Worth_Living
- 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