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Developing user involvement in HIV services in London.

In recent years attention has been focused on the greater participation of health service users in the identification of health service need, service design, and delivery and service evaluation. This approach attempts to improve communication between health professionals and the health communities they serve in order to deliver more effective services. The establishment of user groups in HIV services has been one approach by which clinicians have attempted to establish ways that service users could help in the improvement of clinical services. This paper describes the process in the involvement of service users in the work of the North East London Sexual Health and HIV Clinical Network (NELNET) and the establishment of a network-wide user group called Patient's Voice. The paper discusses factors and challenges that must be addressed before meaningful user involvement in HIV services can be established.


The UK Department of Health encourages users of the NHS to be actively involved in all aspects of service provision, including decision-making and planning processes and for healthcare providers to welcome the contribution of users' opinions [1-3]. In the management of chronic conditions such as HIV disease, user involvement is particularly important as it can improve communication and understanding between health professionals and the community they serve and helps them to develop services appropriate to the needs of that community. The process also aims to engage the expertise of the patients and increase the self-confidence of service users resulting in better self-management skills and a more collaborative relationship between service user and provider (the 'expert patient') [4-6].

Experiences of involvement for HIV service users

Effective user involvement has been difficult to achieve in NHS services such as those for diabetes and mental health, and in HIV services it has been particularly problematic. The evaluation of HIV services has often been limited to the use of anonymous surveys in an attempt to identify areas of the service that need attention, without being able to tap into the service users' experience and views through any other means [7].

Sexual health services are unique as few people wish to announce publicly that they have a sexual health problem and fewer still that they have HIV disease. Service users may also be reluctant to discuss services normally associated with their personal life and particularly around issues of sex, sexuality, infection, illness and death. People with HIV, who are already stigmatised, have a particularly strong need for confidentiality and may worry that confidentiality would be compromised by participation in user involvement [8,9]. In addition, some healthcare professionals have been reluctant to implement any changes that disturbed the traditional power relationships between users and service providers [9].

In her article, Bruton [9] outlines a successful model of user involvement in the HIV clinic in Brighton. Reflections on the model that was developed concluded that there are barriers to user involvement from both clinicians and service users. Disclosure issues were concerns from the perspective of service users and lack of experience with the philosophy behind user involvement was an issue for clinicians. The paper emphasised the need for an ongoing commitment to the process from both service users and clinicians as it takes time for its benefits to be seen. The notion of the 'stroppy patient' was drawn on: a stroppy patient is one who is empowered and able to talk to clinicians and managers about concerns and who expects to be taken seriously.

A National AIDS Trust report [10] highlighted several barriers to user involvement including: users' lack of skills and confidence; insufficient trust that the NHS would give authority to users to make a meaningful contribution; and the difficulty of creating user involvement that is truly representative of the patient group. The report emphasises the commonality of HIV and the shared issues among people affected such as the needs for appropriate medical and social support, accessible clinic times, support from clinical staff to build confidence, and awareness of stigma and how it affects access to services.

Clients' needs and personal circumstances influence the criteria used to judge the quality of services and users will have conflicting opinions about healthcare provision [8]. This emphasises the challenge of establishing how representative are the different views that will necessarily exist in any group of service users and also the importance of reaching out to marginalised groups whose voices will be even less strong. People from sub-Saharan countries constitute a very large proportion of HIV service users, particularly in London, and there are many challenges involved in ensuring that their voices and experiences are heard [10-12].

Establishing user involvement in North East London: the consultation process

Consultation with service users about their perceptions of how clinical services are organised and delivered is often difficult. Clinicians in London who are part of NELNET and professionals working in the sector organised a consultation event in 2006 to ask service users their opinions and perceptions about services they received: what they would like to influence or change in these services, and what were the ways in which they might do this. The event aimed to give service users examples of successful user involvement models in HIV services. Speakers from existing user involvement groups outlined how they had organised themselves and their experiences of being involved in the process. Participants in the consultation process discussed these issues in small and large groups and had the opportunity to share their opinions, perceptions and ideas of influencing the services provided to them.

The event was widely advertised in five clinics in east London by posters and leaflets and clinical staff were asked to promote the event to their patients. The event was scheduled for the early evening; creche facilities were offered and refreshments were available.

Thirty people indicated that they were interested in attending; however, only 10 people actually attended. Reasons given for not attending were that transport and/or translation was not provided (8), inconvenience of the time of the event (3), other commitments (3), concerns about confidentiality (1) and other reasons (5).

Participants were asked to discuss eight questions within small groups and then to feed back their discussions to the larger group. Notes were made of their feedback. The questions addressed were:

1. How do you tell someone in your clinic/service about things you are happy/unhappy about?

2. How do you feel these comments are acted on?

3. What are the current barriers to service user/patient involvement?

4. How do you feel services are tackling these barriers?

5. What would you like to influence in your current services?

6. How would you do this?

7. How can we change things to improve involvement for HIV services in North East London?

8. How should we prioritise this?


Participants were asked to evaluate the consultation meeting by completing a questionnaire. The questionnaire contained four questions:

1. The most useful topic we talked about this evening was ...?

2. The topic that we talked about that was NOT useful was ...?

3. Was there something we did not talk about that you consider important?

4. Is there anything else you would like us to know about the issues we have discussed this evening?

Participants also had access to a graffiti wall on which they were invited to record any other thoughts they had had about the discussion that was not captured in the discussion or the evaluation.

Views about clinical sevices and signposting

Participants reported that generally they were happy with the clinical services they accessed but there were specific issues about which they had concerns. They agreed that the length of the consultation time they had with their physician in particular was inadequate. They thought that there is an increasing pressure on HIV services due to the increased number of patients and that this is reflected in less time for them individually.

'Doctors have not enough time--a 15-minute appointment is not enough time to discuss everything.'

'When you call them [clinical staff] they don't call back.'

Difficulties with adherence to medication were highlighted and participants felt that not enough help was offered to them. This highlighted a wider issue of access to mental health services.

'More help is needed to help with adherence to the medication.'

'There needs to be greater communication and emphasis on the psychosocial aspects of [antiretroviral] adherence.'

'It is difficult to find the right professionals to address psychosocial problems.'

'Access to mental health services needs to be improved in terms of speed.'

They considered that clinics need to be more flexible in the way that services are delivered particularly with regard to opening times and home delivery of medication. They thought that more people are now in employment due to the success of antiretroviral medication and that 9-to-5 clinic appointments that eat into the working day are inconvenient.

'Clinic opening times need to be more flexible--opening later and at weekends.'

'I talked to my consultant about home delivery [of medication] and how more convenient this would be for me but nothing happened.'

Suggestions about improvement

The education of staff groups about the aims and philosophy of user involvement and providing the practical resources to make user involvement work was emphasised as it would be naive to expect that staff might not feel threatened or challenged by service users with whom they are used to a traditional professional/patient relationship.

'Train medical students at an early stage before they pick up negative attitudes towards people with HIV.'

'Better information for service users to signpost all services and professionals and provide better information about how to access them.'

'Encouraging clinical staff to talk to patients about service user involvement.'

Service user views about the way forward

Practical suggestions were made in order to support user involvement. These included travel issues (booking disabled transport facilities to collect and deliver people home), accessibility issues (stairs, ramps, toilet facilities), travel expenses, creche facilities, language support, appropriate meeting environment and secretarial support.

'Ask the network to support a service user forum by providing a venue to meet, travel expenses, creche, refreshments, stationery costs.'

Service users might also require training in order to help perform their roles, for example how to set up and run meetings, the functions and duties of roles such as Chair and Secretary and how minutes are taken and distributed. Participants addressed this issue and suggested:

'Service users who want to be involved need training and support.'

'Training and support for service users who want to be involved.'

It is important that the service users can see that their contributions have an influence on what service-provision decisions are made. This demonstrates the need for consultation with the service providers about the available options regarding involvement to ensure that the one chosen will suit the needs of the user involvement group and the service providers. One participant suggested:

'Recruit a service user representative to the Clinical Network board.'

The outcome

As a result of the consultation, the service users decided that their participation was essential in the work of the clinical network board. Two service user representatives are now on the board. They are supported by named clinicians who act as champions for user involvement and who support the representatives in practical ways such as briefing them in advance about the context and history of issues. The representatives are currently being invited and encouraged to get involved in the work of various professional groups, for example they have been invited to liaise with mental health professionals to explore how mental health services might better meet the needs of service users.

The service users themselves decided to establish a network-wide group that they call 'Patient's Voice'. This group aims to consult as widely as possible about service users' views on existing services and how they might be improved. Patient's Voice also seeks to empower service users by encouraging a different relationship between them and their treatment centres. This encourages users to become active and informed partners in care by facilitating skills such as assertiveness, questioning and positive self-management. There are two elected co-chairs, one of whom sits on the Network board, and they are supported by professional practitioners who act as PPI champions within the Network.

The Patient's Voice group plans to develop consultation mechanisms with service users at a local clinic level. Not every service user wants to be involved in Patient's Voice but some may wish to offer their opinions and perceptions about their local service. The challenge will be to develop a strategy to seek these opinions and find a useful mechanism to keep local service users informed of developments.

There are also plans to meet African women's groups to encourage participation in Patient's Voice from this section of the community. African people may be unfamiliar with NHS services and are often confronted by language barriers. This power imbalance can negatively influence whether they feel able to be involved and also the content of their responses.


For NHS services, user involvement seems like a seductively easy way to harness the expertise of patients in order to deliver better services and to ensure patients are informed and fully engaged with their treatment. However, meaningful user involvement is a process and not a single event and requires that HIV services invest time and energy. For busy clinicians this might be experienced as burdensome. However as the London HIV Strategy [13] prioritises patient-led and patient-centred services it is essential that HIV services prioritise user involvement as a critical part of the design and delivery of services. This requires meaningful engagement from clinicians, commissioners and health managers to ensure effective user engagement that will improve the experience of care for people using HIV services.

Integrating the principles of self-management of chronic conditions by empowering people at all levels of PPI supports people with HIV to become more actively involved in the planning and delivery of services. It places chronic disease management and PPI within the remit of specialised services although it is a key objective in the commissioning of all services. By establishing effective clinical engagement in user involvement, a patient's experience is placed at the heart of service delivery [13]. It also delivers the key objective of 'Commissioning a Patient-led NHS' [14] of strengthening commissioning and placing clinicians and patients at the heart of the NHS.

The model that NELNET has adopted and the progress achieved by Patient's Voice aims to deliver user involvement in the planning, commissioning and delivery of services within North East London. We need to learn from the experience of other services, both HIV and non-HIV, and recognise that barriers exist to user involvement. Achieving our vision is an ongoing process that requires sensitivity to the needs of the individuals and communities who engage in user involvement, without making false promises or raising expectations. Recognising that service users are a knowledgeable resource to be valued and respected is key to success.

It is important to remember that this process requires people living with HIV to be part of a long-term process that demands time and energy. It is also inevitable that the people involved will sometimes feel unwell and not able to continue their commitment. This presents a challenge to the sustaining the process in the long term. Patient's Voice has suggested that using new technology such as blogs, texting, podcasts and social networking sites may facilitate user involvement by sharing and seeking information that service users find easy and acceptable.

This article has highlighted the some of the challenges in establishing meaningful user involvement in HIV services in the NELNET. We believe we have learned from these experiences and approach user involvement with a better understanding of the complexity of the issues and the need for careful thought and reflection about the issues that emerge and their potential solutions.


(1.) Department of Health. Working for Patients. HMSO, London, 1989.

(2.) Department of Health. Caring for People: Community Care in the Next Decade and Beyond. HMSO, London, 1990.

(3.) Department of Health. Patient and Public Involvement in the New NHS. Department of Health, Leeds, 1999.

(4.) Department of Health. The Expert Patient: A New Approach to Chronic Disease Management in the 21st Century. Department of Health, London, 2001.

(5.) Lindsay J. User Participation. Camden & Islington Health Promotion Service, London, 2001.

(6.) MedFASH (2003) Recommended Standards for NHS HIV services, London. (Available at

(7.) Miles K, Penny N, Power R, Mercey D. Comparing doctor- and nurse-led care in a sexual health clinic: patient satisfaction questionnaire. J Adv Nursing, 2003, 42, 64-72.

(8.) Armes PJ and Higginson IJ. What constitutes high-quality HIV/AIDS palliative care? J Palliat Care, 1999, 15 , 5-12.

(9.) Bruton J. (2004) Constructively stroppy: Paul Clift interviewed by Jane Bruton. HIV Nursing, 4, 3-4.

(10.) National AIDS Trust & Positive People's Project. Involving people living HIV: lessons learnt from seminars held around England in 2004. National AIDS Trust, London, 2004.

(11.) Miah J, Campbell T, Fakoya A, Poulton M. Providing psychological care to families living with HIV in London's East End. AIDS Hepatitis Dig, 2003, 95, 1-3.

(12.) Giannakopolou G, Fakoya A, Aina C, Campbell T. User involvement in the provision of HIV services: some lessons learned from a user group in an HIV treatment centre in London. J R Soc Health, 2006, 126, 178-183.

(13.) London HIV Consortium. The London HIV Strategy. The London Specialised Commissioning Group, London, 2005.

(14.) Department of Health. Commissioning a Patient-Led NHS. Department of Health, London, 2005.

Correspondence: Tomas Campbell, Clinical Psychologist, Clinical Health Psychological Team, Newham Psychological Services, 430 Barking Road, London E13 8HJ. (Email:

Tomas Campbell (1), Janet Murat (2), David McMaster (3) and Ian Hardwick (4)

(1) Consultant Clinical Psychologist, Clinical Health Psychology Team, Newham Psychological

Services and

The Greenway Centre, Newham University Hospital, London;

(2) Clinical Nurse Specialist, Tower Hamlets Primary Care Trust, London;

(3) Health Promotion Worker, Positive East, London;

(4) Service User Representative, North East London Sexual Health & HIV Clinical Network and

Patient's Voice, London
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Author:Campbell, Tomas; Murat, Janet; McMaster, David; Hardwick, Ian
Publication:HIV Nursing
Date:Dec 22, 2007
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