The Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, announced in June that plans for a new system for hearing the voices of people who use health and social care services in a much clearer and stronger way are to be brought forward by the end of the year.
The Scottish Government’s ambition is to ensure that our services are co-produced with the communities they serve, build on people’s assets and support the health and wellbeing of the whole person and their family. We believe this can only be achieved by creating a much stronger voice for people and communities using services. This voice will be respected, representative and informed. It will be focused on improving outcomes, and it will have a key role in driving the future shape of health and social care services, both nationally and locally.
We are working in partnership to develop this ‘Stronger Voice’. Our Project Team includes the Scottish Health Council, COSLA, the ALLIANCE, Scottish Government and public representation.
Since June, we have set up a number of mechanisms to gather the views of people who use services, and the general public. We have developed a programme of national and local events (details in the flyer, attached), there is a dedicated webpage on the Scottish Health Council website, and we are using survey monkey questionnaires and social media to hear a broad range of perspectives.
We are also undertaking a scoping and research exercise, to learn from the literature and from existing models that work in other sectors in Scotland, and in other countries. We are working in partnership with a diverse Reference Group to develop options from the evidence gathered.
Strengthening the Voice of Service Users and the Public in Health and Social Care
To help develop recommendations for the Cabinet Secretary about how to develop a stronger system for hearing the service user and public voice, the Scottish Health Council is working with colleagues in Healthcare Improvement Scotland, and partners including the Scottish Government, The ALLIANCE, COSLA and others.
They are offering a number of options for people to give their ideas, including an online survey.
Survey questions
1. In your view, what would a strong service user and public voice in Scotland look like (i.e. one that can reliably bring about improvements in health and social care services)?
The illustrated quote from the Cabinet Secretary for Health on the Scottish Health Council website states: "we must do more to listen to, and promote, the voices of those we care for…...” Rather than ‘promoting’ the patient’s voice, the key aim should be ‘using’ what the patient has said to improve services. Improving communication and partnership between health professional and patient is key. There is a danger that only the more articulate patients have their voices heard, when what is needed, is a system whereby all patients, through the very process of coming into contact with a health professional, can contribute to bringing about improvements in health and social care services.
‘Using Patient-Reported Information to Improve Health Outcomes and Heath Care Value - Case studies from Dartmouth, Karolinska and Group Health’ (The Darmouth Institute, June 2012) notes that “the voice of the patient – can be used to provide higher quality care to reduce the burden of illness, prevent disease and promote better relationships between patients and doctors”. The review also states “a promising way to improve health care value is to embed information provided by patients into the flow of clinical care using patient-reported measurement systems. The health of patients and populations can be improved and the value of care can be enhanced, by taking advantage of patient reported data within the clinical context.”
While this is not applicable to every situation, it is an illustration of how promoting the voice of the patient by embedding it in the health care process can bring about improvements. This principle should shape future services. None of this can be done in isolation and an immediate connection would be to see this as part of the wider Narrative Medicine ‘debate’ (‘Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust’, Rita Charon, JAMA 2001).
2. How can we strengthen the voice of seldom heard groups of people?
Using the model described in the answer to question 1, having the voice of the patient or service user embedded in the health care process, and with interaction as part of the feedback loop, no one would be ‘seldom heard’. The advantage of embedding the voice of all service users, also avoids stigmatising, ignoring or over focusing on particular groups of patients.
For those groups for whom communication and participation is complex and difficult ie people with dementia and complex learning difficulties, or young children, a strong advocacy support service needs to be in place to support them. Family/partners are not always the best suited to be the person’s advocate; so it can be in the patient’s interest to have access to an independent advocacy service, where possible. High quality independent advocacy support can also take pressure off families and partners.
3. What existing innovative approaches should be adopted more widely?
Use of technology, such as online methods to gather and report the views of service users. Innovations, such as animation are also welcomed.
4. What tools and methods could help the Scottish Government to regularly “take the temperature” of views across people who use support and services?
Sampling – structured form of follow up to learn from the experience of service users and their families/ carers. This could be done by phone where appropriate or direct face to face interviews with well trained interviewers.
5. What role can the third sector play in acting as the conduit for people’s views?
Providing independent advocacy services or acting as champions for patients/groups of patients.
Developing and supporting pilot studies and research focussing on the outcomes and potential benefits of improved communication, and embedding the patient and their narrative in the process. These studies can be small scale, local and undertaken at relatively low cost. To effect major change in strengthening services users voices, more comprehensive studies may be required, possibly funded by the Scottish Government.
6. Do you have any ideas about how we can best use new or existing means of engaging with people to strengthen their voice?
A promoted national point of contact easily accessible via existing local service eg GP practice.
7. How can we listen and act more effectively when we hear the perspectives of people who use health and social care services and the public (at a local level)?
Professionals and Governments should be seen to be responsive to the voices and perspectives of health and social care service users, and have these views demonstrate impact. Publicising or having this known to service users should encourage others to share their experiences and perspectives.
8. How can we listen and act more effectively when we hear the perspectives of people who use health and social care services and the public (at a national level)?
See answer to question 7.
9. Please provide any further comments you wish to make.
NOTE: THIS RESPONSE WAS SUBMITTED ONLINE BY SARA COLLIER ON BEHALF OF RCPE ON 29/10/14