Northern Ireland Patient and Client Council
- General Issues
Mission and Purpose
The PCC directly tackles the issue of involving the public and creating a people-centred service of care. Its stated purpose is to ‘provide a powerful, independent voice for patients, clients, carers, and communities on health and social care issues’.
The Northern Ireland Assembly passed the ‘Health and Social Care (Reform) Act (Northern Ireland) 2009’ in order to meet the goals of the review. This Act initiated a wholesale restructuring of the health provision system. Several agencies, such as the Health and Social Services Councils and Mental Health Commission, were dissolved. Other organisations were renamed: the Health and Social Services trusts, for instance, became the Health and Social Care trusts. Finally, new organisations were set up in the policy area of health and social care, among these the ‘health and social care bodies’, one of which is the Patient and Client Council. Thus the Patient and Client Council was established as part of a broader programme to improve health and social care provision in Northern Ireland. In 2012, the PCC released a report of all its major findings over the three years. It continues to operate to date.
The Northern Ireland Executive launched a review of public administration (RPA) in 2002 in order to assess the arrangements for accountability, development, and delivery of all public services. The result of that review was a radical and complex overhaul of the entire structure of public administration, particularly in the areas of Education, Health, and Local Government.
The Patient and Client Council (PCC) was established in April 2009 as part of a drive to modernise the provision of health and social care in Northern Ireland. A 2005 report titled ‘A Healthier Future’ outlines many of the problems Northern Ireland was facing prior to the modernisation efforts, particularly when compared to other countries in the United Kingdom. These problems were described in the report as ‘neither acceptable nor sustainable’ but had multiple sources, and thus required wholesale change in the health and social care system.
At the time, it was recognised that Northern Ireland had a had the highest rate of deaths from heart disease in Europe. Cancer survival rates were only median among European countries. Furthermore, smoking constituted the single biggest cause of premature deaths and avoidable illnesses in Northern Ireland, claiming £22 million in related healthcare costs. Similarly, 750 people were dying prematurely every year due to alcohol. The direct impact on government was estimated at £34 million a year in losses due to hospital care and alcohol-related crimes. Aside from this, rising levels of obesity and lower rates of physical activity among the people of Northern Ireland were also predicted to create greater burdens on the healthcare system.
Demographic changes were among some of the big concerns. The report predicted that the next 20 years would see an increase in demand for health and social care. The population was expected to grow from just over 1.7 million to just over 1.8 million in 2024. However, while there were 118,000 more children aged under 16 than people of pensionable age in 2003, by 2026 this trend would reverse. The average age in Northern Ireland was predicted to rise from 36.8 years to 41.3 years. Importantly, while a younger population than the UK average would suggest that Northern Ireland would have fewer health and social care needs, this was offset by higher levels of deprivation, higher levels of physical and psychological morbidity, and higher levels of disability.
Another important consideration was that there was a worrying level of inequality in healthcare provision. Citizens with poorer socio-economic backgrounds tended to have less access to care facilities, seek help at later stages of disease development, and showed a lower level of demand for professionals. At the same time, people in these groups were more likely to smoke, experience social exclusion and depression, and had higher rates of teenage pregnancy. At particular risk of exclusion were people with disabilities, carers, some children and young people, travellers and people from Black and minority ethnic groups, people with mental health problems, asylum seekers and refugees, people with alcohol and drug dependency, LGBT, older people, homeless people, and victims.
The concern was that if the government did not engage with the public and address these issues, ‘the result may be a system which is increasingly unresponsive, unable to meet its obligations under equality and human rights legislation, skewed towards the needs of those who “shout the loudest” and are most articulate, and for which it is not possible to plan over the longer term’.
In response to this, the report set out a 20-year strategy to improve Northern Ireland’s health, social care, and public safety with particular emphasis on responsive provision, equality between different social groups, and public involvement in decision-making. Part of the grand strategy was to involve the public more directly. It was noted that communities were not prepared to accept decisions affecting their lives without question and that citizens felt better about their care when they felt their concerns had been listened to. In particular, there was less risk of inappropriate treatment and individuals were more likely to complete programmes of treatment if there was a sense of ownership. The PCC directly tackles the issue of involving the public and creating a people-centred service of care. Its stated purpose is to ‘provide a powerful, independent voice for patients, clients, carers, and communities on health and social care issues’.
Origanizational Structure and Funding
The PCC was established by the Northern Ireland Assembly, a devolved body of the United Kingdom that governs the autonomous region of Northern Ireland. However, the PCC is directly accountable to the Assembly’s Department for Health, Social Services & Public Safety. As a publicly funded organisation, its budget is derived from the government.
The PCC recognises that its constituents are diverse and thus using one means of selecting participants will necessarily mean excluding certain groups. For instance, while the internet is used to conduct surveys and recruit citizens, 40% of the constituents do not have access to a computer and thus non-computer based methods are also utilised. The PCC recognises that people are more likely to respond when asked in personal rather than impersonal ways. Thus, newspaper advertisements and distribution of newsletters are not utilised for recruitment. Rather, people are asked directly during face-to-face contact or via letters.
The PCC membership scheme is one key way in which recruitment happens. This is open to all residents of Northern Ireland. Individuals initially sign up online via the PCC website with a username and password. They are then given an opportunity to set their preferred method of communication to post, email or telephone. Members opt in as participants for each of the PCC projects and are contacted via their preferred method of communication.
Local Advisory Committees (LACs) are another means for citizens to get involved in the activities of the PCC. Each of the five areas of Northern Ireland (Northern, Southern, Belfast, South Eastern, Western) has a dedicated LAC, which is composed of 8 people from that locality and chaired by one PCC official. LACs advise the PCC on local issues and opinions. Positions on Local Advisory Committees (LAC) are advertised and require citizens to apply by filling out a form that states their desire and suitability for the position. It is a volunteer position, although expenses are paid by the PCC.
Between 2009 and 2012, the PCC engaged over 13000 members of the public to discover their views, experiences, and desires of health and social care provision in Northern Ireland.
Specializations and Activities
The PCC engages in numerous projects every year, which utilise different methodologies and deliver results according to their respective research questions. Participants recruited according to the methods outlined in ‘Participant Selection’ engage in focus groups, one-on-one interviews, group interviews, debates and discussions, telephone and online surveys, and street surveys. The following two cases are merely examples of a variety of methods applied by the PCC.
Major Projects and Publications
Report on the Public Engagement on “Priorities for Action”, 2009
The purpose of this project was to gain an understanding of the people’s priorities for health and social care and advise the Department of Health, Social Services & Public Safety on public attitudes about the setting of targets. The participants for this project were individual clients, service users, and carers. After agreeing to participate in the project, each participant was sent a letter explaining the purpose of the meeting, the questions that would be addressed, the means of their participation and what their role is.
The participants were brought together into groups for open discussion, with each group attended by two PCC staff who guided the proceedings. The meetings were conducted between August and November 2009. Five meetings were held in each of the Health and Social Care Trust areas, and five meetings were held for groups with a special interest or remit in Northern Ireland. Special consideration was made to ensure a balance locally or regionally between men and women, persons of different religious beliefs, racial groups, ages, marital statuses, sexual orientation, political opinion, gender, disability, and those with and without dependents. Altogether 27 meetings were held involving 303 members of the public. Almost everyone who attended the meetings was able to make a contribution to the discussion.
All meetings followed the same general format: a PCC member of staff first delivered a short introduction at the beginning of the event, after which the discussions would proceed for one hour. The discussion centred around three questions:
- Were you aware of the targets before we met?
- Have you noticed any differences in health and social care recently?
- If you were the Minister, what would be your top priorities?
After the meeting, the PCC staff who attended the meeting wrote a brief report and sent it to the participants to give them the opportunity to confirm that it reflected their contributions and make comments. Staff also informed the participants that they would receive a copy of the full report once it had been published and information on the Department’s response.
The People’s Priorities on Future Priorities for Health and Social Care in Northern Ireland, 2010
This report, similar to the 2009 one, aims to gather the people’s opinions on the setting of targets and priorities for the Department. However, the methodology was different.
Overall, 17 street consultations were conducted in which members of the public were approached on a one-to-one basis during public events such as the Ould Lammas Fair. People were also approached in shopping centres and GP surgeries. Besides this, 24 group meetings were held with participants in order to gain more in-depth discussion of the same survey questions and also to give them an opportunity to share their personal experiences. Overall 940 members of the public took part in the project. 579 individuals answered the short questionnaire on the street while 361 people took part in the group discussions. Each individual was asked to suggest three priorities for health and social care, which generated 1700 responses.
The meetings took place in each of the five Health and Social Care Trust areas and involved individuals from the PCC Membership Scheme as well as community groups and representatives of the voluntary sector. As in the previous year, a PCC staff member gave a short introduction on the ‘Priorities for Action’ project before the discussion was held. The three questions in the questionnaire and discussions were:
- Were you aware of the PFA Targets before we met?
- In light of the proposed reductions in funding for health and social care, if you were the Health Minister, what would your top three priorities be in health and social care in 2011 and beyond?
- Do you think targets are important to the delivery of health and social care and if so why?
Influence, Outcomes, and Effects
Every report from the PCC is used as a basis for discussions with decision-makers. For example, the 2009 ‘Report on the Public Engagement on Priorities for Action’ made recommendations about issues such as the application of standards and targets and the need for standards of communication. Some of the recommendations were adopted in the Department’s 2010 ‘Priorities for Action’ document, which sets out the targets for the implementing bodies on health and social services. The reports thus have a direct and continuous relevance to policy.
Notably, in 2012, the PCC reviewed 34 reports that they had produced since 2009 and summarised the results and impact of the consultations with more than 13000 members of the public. The 2012 report makes explicit comparisons to the Department’s own 2011 ‘Transforming Your Care’ report to inform how the official line converges with and diverges from the views of the public. It therefore served as a good way of seeing gaps in planning.
The main results were as follows:
The key message of ‘Transforming Your Care’ is that change in health is necessary, not an option, and this is reflected in the views of the citizens, who acknowledge that current practises need to change. ‘Transforming Your Care’ also made 99 recommendations, most of which overlapped with the priorities of the public. For example, the emphasis on integrated care and joined-up approach to urgent care in ‘Transforming Your Care’ resonates with the wishes of the people. The significant overlaps are due to three principles that are shared between the Department and the people: placing the individual at the centre of any model of care, using quality evidence to shape services, and providing the right care in the right place at the right time.
However, there were a couple of major recommendations made in ‘Transforming Your Care’ that would challenge the views of the public. One recommendation was that care should be provided as close to home as possible. While there is some support for this idea, this proposal would still conflict with the concerns most have expressed about the quality of care provided by community care services. Another recommendation that may prove controversial is the aim to reduce the number of major acute hospitals from ten to the range of ‘five to seven’. This might fly in the face of the public’s concern for equal access to quality hospital care regardless of location.
Analysis and Criticism
The PCC engages in several projects every year and employs a variety of methods to uncover the views of the public. However, there has been some concern raised that it may be falling short of its duty to effectively collate and respond to complaints by the public. On 14th may 2013, the Health and Social Care Board led a workshop in which members of the public were invited to speak to officials about their experiences with lodging complaints. 27 members of the public attended and more submitted comments via email and telephone. 21 on of those who attended had attempted to lodge a complaint while 6 had not. The majority said they were unaware of the role of bodies such as the PCC in the complaints procedure. They either did not know that the PCC existed or that it had a duty to support complainants in finding information about complaints, letter-writing, and keeping them abreast of the status of their complaints. It was decided that greater promotion of the support and advocacy bodies like the PCC would be required.
Department of Health, Social Services and Public Safety (2005): A Healtheir Future: A Twenty Year Vision for Health and Wellbeing in Northern Ireland 2005 - 2025, available at http://www.dhsspsni.gov.uk/healthyfuture-main.pdf [DEAD LINK]
UPDATE: similar content is available at http://www.publichealth.ie/document/healthier-future-20-year-vision-heal...
Health and Social Care Board (2013): Report on the Outcomes from the 'Improving the Complaints Process in the HSC' Workshop, available at http://www.hscboard.hscni.net/publications/2013/20130812%20Report%20on%20the%20Outcomes%20from%20the%20Improving%20the%20Complaints%20Process%20in%20the%20HSC%20Workshop.pdf
Patient and Client Council (2009): Report on the Public Engagement on Priorities for Action, available at http://www.patientclientcouncil.hscni.net/uploads/research/Public_Engage...
Patient and Client Council (2010): The People's Priorities, available at http://www.patientclientcouncil.hscni.net/uploads/research/The_Peoples_Priorities_-_Report.pdf
Patient and Client Council (2012a): The People's Priorities for Transforming Your Care, available at http://www.patientclientcouncil.hscni.net/uploads/research/Peoples_Priorities_-_TYC.pdf
Patient and Client Council (2012b): Involving You: why and how you can take part in our work, available at http://www.patientclientcouncil.hscni.net/uploads/files/PCC_Involving_You-March_2013.pdf [BROKEN LINK]
Major projects and events