The East of England Citizens’ Senate weekly drop-ins have been focusing on frailty: prevention, treatment, cure. We have also considered frailty through the lens of hospices: palliative and end of life care, prevention and compassionate communities.
We used the following questions to direct the conversations:
i) What is frailty?
ii) What does it mean to me?
iii) How to support people who are deemed frail?
In 2010, the Marmot Review stated that healthcare inequalities “are not inevitable and can be significantly reduced… avoidable health inequalities are unfair and putting them right is a matter of social justice”.
There are known, unfair and avoidable differences in health between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies. They influence the risk of people becoming ill, their ability to prevent illness, their opportunities to access the right treatment when ill-health occurs, and mean some people have poorer outcomes or longer recovery times than others.
When inequalities cause or increase the risk of harm to patients in healthcare, they are considered to be patient safety healthcare inequalities. Viewing healthcare inequalities through the lens of patient safety identifies an important line of action for which healthcare professionals and systems have a clear responsibility.
The patient safety healthcare inequalities reduction framework sets out 5 principles to reduce patient safety healthcare inequalities across the NHS.
All staff, patients, service users, families and carers have access to information, translation and interpretation services when needed.
All healthcare staff receive undergraduate patient safety training, ongoing training, and accessible resources that improve their awareness and understanding of healthcare inequalities related to patient safety risks.
Accurate and complete diversity data are collected for protected characteristics and inclusion health groups on digital platforms. This work includes making disaggregated data available so evaluation can drive improvements in patient safety and healthcare inequalities.
Representatives of diverse communities are involved in the design and delivery of improvements aimed at reducing patient safety healthcare inequalities. This co-production involves drawing on the knowledge and experience of patients, service users, carers, families, communities and staff.
Improve the understanding of patient safety healthcare inequalities and drive improvement through identifying priority areas for research.
Members of the public can get involved in health and social care research in a variety of meaningful ways—ranging from helping shape what research gets done, to participating in studies, to helping share findings. These roles generally fall into two broad categories: public involvement and participation.
Download Public Involvement in Research.pdf (201.9 KB)STANDARD QUESTIONS FOR ANY NHS PROJECT INVOLVING PATIENTS AND PUBLIC REPRESENTATIVES
“NHS England must make arrangements to secure that individuals to whom the services are being or may be provided and their carers and representatives, if any, are involved (whether by being consulted or being provided with information) in the planning of commissioning arrangements and in the development and consideration of proposals (NHS Health and Care Act section 13Q 2022)”. Optimal performance is achieved by truly engaging in co-production not tokenistic box ticking.
The following questions will help you to guage whether this is taking place:
Have patients and public been invited to participate from the beginning of the project?
How will the necessary expenses and time spent in the role be compensated?
Face-to-Face meetings develop more synergy than webinars so have face-to-face meetings been factored in and scheduled as part of the workplan?
Are the briefing papers be sent to members seven days before the meeting so they can study contents?
Is the text in presentations of sufficient size to be easily read when projected on display screen?
Is full documentation available for the patient in both digital and printed format?
Does all information meet the simplistic requirements of the Write to Me project?
Have all acronyms been expanded?
Is there a glossary of all acronyms been provided in large documents?
Medical Research Trials and Pilots
Has a record of the interview with the Multi-Disciplinary Team or consultant been provided?
Have the patients involved in research program been given a holistic needs assessment?
Has a personal contact (advanced nurse practitioner or similar) been identified to the patient?
Does the programme comply with GDPR requirements on data security?
Have patients in the trial been reassured as to how their personal information will be shared?
Is the research being carried out uniformly across all areas of England?
Does the service protect LGBTQIA+ interests?
Are the needs of the patient with highest indices of social deprivation (homeless, sex workers, travelers, people from minority ethnicities) been addressed?
Paul Osman 9th July 2023
The National Mental Health Programme is broad ranging and there are many care pathways in mental health for children and in adults. It has been challenging to develop a succinct list of the research priorities for all the mental health policy areas (demand signalling). The list given in this report is the joint response from service users, mental health charities, clinicians, researchers and policy developers; the overarching research needs to underpin implementation of the Mental Health Long Term Plan spanning the decade from 2019.
