Meet our Service User Representative: Siobhean McCarthy-Perham  

Siobhean McCarthy-Perham  
Service User Voice Representative
PRSB Assurance Committee

Can you tell us a bit about your role as a Service User Representative? 
My role is to help make sure that PRSB standards and resources are fit for purpose and reflect the needs, experiences, and priorities of patients and service users. I am a member of PRSB’s Assurance Committee and provide independent scrutiny of the processes and methodologies used by the PRSB to develop professional care record standards, services, and tools. 

Alongside my work with PRSB, I hold a number of national service user and patient representative positions, including membership of the NHSE Maternity and Neonatal Stakeholder Council and the MBRRACE-UK Collaboration. I also contribute to research projects with leading academic institutions, including the Universities of Oxford, Cambridge, Lancashire, and King’s College London, helping to ensure that lived experience is embedded in research, policy development, and service improvement initiatives. 

 

What led you to become a service user representative?
My involvement began as an MNVP (Maternity and Neonatal Voices Partnership) Lead, where I work to ensure that the experiences and perspectives of women, birthing people, babies, and families directly inform the design, delivery, and improvement of maternity and neonatal services. 

 My personal experiences with maternity services have provided me with valuable insight into both the strengths of the service and the areas where improvements could be made. Through navigating the maternity care pathway as a patient, I have developed a deeper understanding of how services are delivered, how decisions impact families, and the importance of compassionate, patient-centred care. 

In particular, I have experienced significant challenges, including contracting sepsis and the devastating loss of a baby. These experiences have given me first-hand knowledge of the emotional, physical, and practical support that families require during some of the most difficult moments of their lives. They have also highlighted the importance of effective communication, timely intervention, continuity of care, and ensuring that patients and their families feel heard, supported, and involved in decisions about their care. 

As a result, I can bring a unique perspective that combines lived experience with a genuine commitment to helping improve maternity services for future patients and families. 

 

Can you give us an example of a project where you feel your input really helped to make a difference?
As part of the Obstetric Anaesthetic Standard project, I was involved throughout all stages of development, including recruiting participants and facilitating the service user voice webinars. 

I really valued working with the service users and finding out how things could be improved for them based on their experiences. One of the people who took part in our online workshops had recently had her second child. Her partner was serving in the military, and her family had frequently moved around, living in Scotland and England. She recalled having easy access to her digital maternity notes during her first pregnancy but told us that her maternity record from Scotland was not available to the clinicians caring for her later in England. This meant she had to be responsible for relaying her pregnancy history to the team. 

She had also received maternity care at two hospital trusts during her second pregnancy and had found that teams at each trust would have information the other did not. Where information was shared, it was often delayed several weeks. On the day of her labour, she was upset to find that the hospital did not have access to her record or notes on her birth preferences, despite it being pre-planned. Instead, she had to relay even basic information such as her blood type to her care team whilst being induced and arrange for the transfer of her notes herself. 

Having personal experiences like this really helped us understand what was happening in practice, and to identify gaps in information sharing and explore what improvements were needed. 

 

What do you find most rewarding about this work?
What I enjoyed most about my role within the OAS project team was the opportunity to ensure that the voices and experiences of patients, service users, and families were heard and valued alongside professional expertise. I found it rewarding to bring lived experience into discussions and see how those perspectives could influence decision-making, shape projects, and improve outcomes. 

I also enjoyed working collaboratively with a wide range of stakeholders, building relationships, and engaging with diverse communities to understand different experiences and viewpoints. Knowing that I could help bridge the gap between organisations and the people they serve, and contribute to making services, standards, and research more person-centred and accessible, was particularly fulfilling. 

 

What do service users notice or bring to discussions that professionals or technical experts might miss?
 Service users can highlight practical issues, barriers, and unintended consequences that may not be obvious to professionals or technical experts. They often notice how policies, standards, or services are experienced in practice, whether communication is clear and accessible, and whether proposed solutions truly meet the needs of the people they are intended to support. Their insights help ensure that decisions are grounded in what matters most to patients, families, and the wider public. 

 

There is a strong NHS and government focus on self-care, apps, and digital tools to empower people to take more control of their health and care. Why do you think that matters?
Supporting people to take a more active role in their health and care can lead to better outcomes, greater confidence, and a more personalised experience. Digital tools and apps can give people easier access to information, records, and support, helping them make informed decisions and manage their health more effectively. However, it is important that these tools are designed with users in mind, are accessible to diverse communities, and complement rather than replace personal support and clinical care. 

 

Why do you think PRSB’s standards matter for patients, service users, and carers?
PRSB’s standards matter because they help ensure that health and care information is recorded consistently, accurately, and shared appropriately between professionals and services. For patients, service users, and carers, this can mean safer, more coordinated care, fewer occasions where information must be repeated, and greater confidence that the right people have access to the right information at the right time. Good record standards also support clearer communication and help ensure that care is more person-centred and responsive to individual needs. PRSB’s independence is important in the production of standards because it allows standards to be developed objectively, drawing on the expertise of health and care professionals, patients, service users, and carers without being influenced by the interests of any single organisation or supplier. This helps build trust and confidence that the standards are focused on improving care, supporting interoperability, and meeting the needs of those who use and deliver services across the health and care system. 

 

Looking ahead, what would you like to see more of when it comes to involving patients and service users in health and care?
I would like to see patients and service users involved earlier and more meaningfully in the development of health and care services, policies, standards, and research. Too often, involvement can feel like consultation after key decisions have already been made. True co-production means working in partnership from the outset, valuing lived experience alongside professional expertise. 

Having a dedicated Service User or Patient Lead embedded within each project helps ensure that patient perspectives are considered throughout the entire process, from initial scoping and development through to implementation and evaluation. A dedicated service user lead can also support outreach to diverse and underrepresented groups, ensuring that standards reflect the needs of the populations they are intended to serve. This would help hear from a wider range of voices, identify potential barriers or unintended consequences early, and ultimately develop standards that are more inclusive, person-centred, and trusted by the people who use health and care services. 

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Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.