Publications

Publications produced by Positively UK including policy work and reports, information for service users, and the now defunct magazine

Realising the Value Animated

Thursday, February 2nd, 2017

This animation sets out what person- and community-centred approaches in health and care are and some of the many benefits they bring. It was developed by the Realising the Value programme in collaboration with Positively UK and other local partner sites across the country, drawing on the real-life experience of the people they work with.

 

To find out more about Realising the Value, check out the website here…

Realising the value: Ten key actions to put people and communities at the heart of health and wellbeing

Thursday, February 2nd, 2017

Click here to download the report

This report sets out what the Realising the Value programme found about the difference person- and community-centred approaches can make – and what needs to happen to support their successful implementation and spread.

We want a health and care system that listens to what is important to people and works with them to build the best care to meet their goals. A system in which excellent clinical and social care is combined with support that equips people to take an active role in their health and to live as well as possible with health conditions. A system in which people feel in control, valued, motivated and supported.

This is what it means to realise the value of people and communities at the heart of health and wellbeing – a ‘social model’ of health and wellbeing that combines a deep understanding of what matters to people with excellent clinical and social care, timely data and strong, sustained social support.

For this vision to become reality, person- and community-centred ways of working need to become widely understood and valued as core to the whole health and care system, not just ‘nice to have’. They need to be woven into not just the infrastructure of the system but also the culture of how things are done. Every health and care professional needs to understand their role in this way and every health and care service needs to be designed and delivered this way. This will look and feel very different across the system (whether in A&E or wellbeing checks) but there should be a universal commitment to a future in which care that is not person-centred is viewed as a ‘never event’ across the system.

The system has committed to this broad agenda and much work is underway to embed person- and community-centred approaches in national programmes and in the delivery of local services. There now needs to be a step change in ambition, leadership and alignment – combined with sustained implementation – to move from intent to action.

The Realising the Value programme has moved this field on by drawing together the evidence base, establishing new networks and creating practical resources for commissioners, practitioners and others.
We have aimed to build on, amplify and reinforce existing work. We hope the Realising the Value programme will help future work marshal resources to create the transformational shift that is needed.

 

To find out more about Realising the Value, check out the website here…

Making it happen: Practical learning and tips from the five Realising the Value local partner sites

Thursday, February 2nd, 2017

Click here to download the report

This catalogue of learning forms part of a final package of recommendations and resources from the Realising the Value programme. Over the course of the last 18 months, we have sought to consolidate what is known about person- and community-centred approaches for health and wellbeing and make recommendations on how they can have maximum impact.

While there is significant breadth and variety across person- and community-centred approaches, they are united by a common purpose: to genuinely put people and communities at the heart of health and wellbeing, focusing on what is important to people, what skills and attributes they have and on the role of their family, friends and communities.

The most successful examples of person- and community-centred approaches in practice are those which are developed by people and communities, working with and alongside commissioners and policymakers, to build on existing assets and co-produce solutions that work.

The Realising the Value programme has focused on five approaches in particular, to develop a richer understanding of how they add value, and what works to embed and spread them. In practice, person- and community-centred approaches are often not separate or distinct interventions – for example, peer support can include elements of self-management education and health coaching. However, some distinction has been necessary to enable greater understanding of what they look like and how they work.

This catalogue of learning has been produced in close collaboration with the partner sites, including Positively UK, drawing on evidence combined with their practical learning and tips to others seeking to get to grips with the practicalities of person- and community-centred approaches.

 

To find out more about Realising the Value, check out the website here…

What the system can do: The role of national bodies in realising the value of people and communities in health and care

Thursday, February 2nd, 2017

Click here to download the report

It is welcome that national policies, including the NHS Five Year Forward View, increasingly recognise that to improve health and the quality of care, people and communities should be active in co-creating health and wellbeing with the formal services and the staff who support them, not passive recipients of care or services. Evidence is growing that more person- and community-centred approaches to promoting health and providing care will lead to improved health and wellbeing for individuals, as well as stronger and more resilient communities and social networks. In time the hope is that these approaches may also contribute to reducing demand on formal services.

In England, a wide range of person- and community-centred approaches for health and wellbeing are already in full operation or being tested, spanning health, social care, wider public services and communities. NHS England has also been developing a self-care programme ensuring that person- and community-centred approaches are embedded in key national programmes. If the policy direction is clear, the key question addressed in this report is how can we achieve faster progress?

Learning from Realising the Value, highlights that most of the factors associated with successful implementation of person- and community-centred approaches for health and wellbeing are to do with local context. This could involve passionate individuals leading change, local partnerships growing strong on the back of successful pilots, supportive local leadership, or time spent building and sustaining relationships across organisations and with communities. Clearly, the local context is the primary responsibility of local organisations and communities.

However, local context is influenced by the policies designed by national bodies, such as NHS England, Health Education England (HEE), NHS Improvement, the Care Quality Commission (CQC) and the National Institute for Health and Care Excellence (NICE). And while national policies can help progress, they can also unintentionally hinder. Commonly cited obstacles include: contracting arrangements, commissioning structures, competition, information governance, and competing national directives. National bodies have a crucially important role in identifying and reducing or removing these avoidable barriers.

Some of these barriers have arisen because they may serve other policy goals, rather than encouraging person- or community-centred approaches. And there are a great number of policy priorities and initiatives at present. The most obvious is work to ensure that the NHS in England lives within its growth-constrained budget, while still achieving the goals set out in the NHS Constitution and the changes set out in the NHS Five Year Forward View. In the 18 months since the Realising the Value programme was commissioned, the New Care Models and Integrated Personal Commissioning programmes have started; the second wave of Integrated Care and Support Pioneers was announced (and the early evaluation of the first wave was published); there have been several ‘devolution deals’ in health care;1 and Sustainability and Transformation Plans (STPs) were announced.

This report focuses on how national bodies can best remove barriers to progressing person- and community-centred approaches for health and wellbeing. It reviews the range of mechanisms (often called system levers) national bodies use to influence health and care services to achieve policy objectives, and the impact these have on person- and community- centred approaches for health and wellbeing. It suggests what national bodies might best do to help implement and spread these approaches, including the five approaches that the Realising the Value programme focused on: self-management education; peer support; health coaching; group activities; and community asset based approaches.

Local action will continue to be the main driver of change towards more person- and community-centred approaches, particularly in the current complex, pressurised and dynamic context. However, this report identifies six key findings relevant for policymakers and national system leaders, and a range of specific actions that could be taken in areas such as education and training, regulation and commissioning to help create an environment conducive to these approaches flourishing.

 

To find out more about Realising the Value, check out the website here…

Impact and cost: Economic modelling tool for commissioners

Thursday, February 2nd, 2017

Click here to download the report

The Realising the Value programme has developed an economic modelling tool to help commissioners evaluate the potential impact of investing in person- and community-centred approaches.

The economic modelling undertaken by the Realising the Value programme and detailed in the summary report suggests that implementing person- and community-centred approaches at scale has the potential to contribute to efforts to slow the demand pressures on the system and may yield efficiency savings.
The summary report also suggests how the evidence base can be enhanced in the future, in order to produce more robust modelling and local business cases.

The Realising the Value economic modelling tool allows commissioners to assess the potential impact of commissioning person- and community-centred approaches in their local area. It aims to help people who want to commission these approaches build the business case for doing so.

The tool has been developed in close collaboration with local sites, commissioners and experts in economic modelling and person- and community-centred approaches. It draws on high-quality research evidence as well as data collected from the five Realising the Value local partner sites across the country. These sites are all mature practitioners in the area of person- and community-centred approaches.

 

To find out more about Realising the Value, check out the website here…

New approaches to value in health and care

Thursday, February 2nd, 2017

Click here to download the report

Why do we need new approaches to value in health and care?

The NHS has set new directions for itself. Its ‘new care models’, with new purposes (population health), new ways of working with communities and new cultures of care (engagement and empowerment) need new frameworks and measures for the value they are seeking to achieve.

This means starting now to develop better measures that will be capable, in three to five years’ time, of capturing whether integrated local systems are maximising the value created by people and communities, and securing the outcomes that matter most to them.

When people are actively involved in their own health and wellbeing, or support others to stay well, it creates value for them and the health and care system in a number of ways.

On an individual level: People make decisions every day that can impact on their longer-term health and wellbeing – for example in relation to exercise, managing stress, taking part in social activities or developing skills to successfully look after a health condition. The Wanless Review suggested that ‘for every £100 spent on encouraging self-care, around £150 worth of benefits can be delivered in return’.

Caring for others: Over six million people are involved in informal caring, a quarter of them full time, with the total value estimated at £132bn a year – greater than the NHS budget. They are the biggest ‘workforce’ and deliver the bulk of care.

Volunteering: Around a quarter of all adults are involved in regular volunteering, with the Office for National Statistics (ONS) estimating formal volunteering to be worth almost £24bn per year. Only a portion of this activity is directly related to health or care, but much of it supports individual and community wellbeing.

The majority of this value, however, goes unrecognised by formal systems. The Realising the Value programme therefore set out to explore what ‘value’ means for people and communities, and how this can be understood most appropriately by the NHS.

This paper builds on a discussion paper published in 2015 and subsequent engagement undertaken as part of the Realising the Value programme. It makes a series of calls to action to ensure that the approach to understanding, capturing, measuring and assessing value in health and care takes full account of value, as it is experienced and created by people and communities. The calls to action include:

  • building a consensus on replacing the National Outcomes Frameworks with a simplified cross system framework
  • basing core national outcomes on the health and wellbeing outcomes that are most important to people and communities
  • prioritising support for commissioners to build skills, knowledge and confidence to commission for the outcomes that people and communities value
  • ensuring widespread use of the Public Services (Social Value) Act 20125 in health commissioning

These calls to action will enable a shift to a future articulation of value that is aligned across health and social care and community organisations.

The report also proposes a set of value statements and accompanying pledges. These could be adopted immediately by local areas or New Care Model programme vanguard sites, seeking to add value to people’s lives and mobilise the value that people and communities themselves can create for health and wellbeing.

 

To find out more about Realising the Value, check out the website here…

Supporting self-management: A guide to enabling behaviour change for health and wellbeing using person- and community-centred approaches

Thursday, February 2nd, 2017

Click here to download the report

This guide is for people who support those living with long-term conditions, their carers, families or communities. It summarises practical ways to support people to self manage effectively using person and community-centred approaches. Many of these activities are useful also for people who work to prevent the development of long-term conditions in the first place.

This guide offers two things: a framework for understanding and changing behaviour, and real-world examples of how these changes happen in practice.

A framework for understanding and changing behaviour

This guide uses the Behavioural Insights Team’s EAST framework to organise ideas and examples. It is intended to be a user-friendly and memorable tool for considering the main drivers of behaviour and generating effective approaches for addressing them.

The Realising the Value programme has published an accompanying report that looks at the theories relevant to the ideas outlined in this guide in more depth: Making the change: Behavioural factors in person- and community-centred approaches to health and wellbeing. Readers may find that report useful to read alongside this action-focused guide.

Real-world examples of changing behaviours to spread person- and community-centred approaches

This guide provides examples from the five Realising the Value partner sites, including Positively UK, categorised by the EAST framework. It features a number of low-tech, pragmatic and manageable activities which can increase the spread of person- and community-centred health and wellbeing programmes.

We have taken effective approaches from both academic theory and the five sites and boiled them down to the mechanisms that seem to work most effectively. These are featured in coloured boxes throughout the guide. Practitioners can then incorporate these elements into the design of their own health and wellbeing programmes.

 

To find out more about Realising the Value, check out the website here…

Spreading Change: A guide to enabling the spread of person- and community-centred approaches for health and wellbeing

Thursday, February 2nd, 2017

Click here to download the report

This guide is for people who champion person- and community-centred approaches in health and social care, in other statutory bodies and in community-based organisations. Change is more likely to spread when both statutory organisations and community-based organisations align approaches. For this reason we feature case studies from both parts of the system. They are colour coded to enable different audiences to navigate the guide easily.

This guide offers two things: a framework for understanding and changing behaviour, and real-world examples of how these changes happen in practice.

A framework for understanding and changing behaviour

This guide uses the Behavioural Insights Team’s EAST framework to organise ideas and examples. It is intended to be a user-friendly and memorable tool for considering the main drivers of behaviour and generating effective approaches for addressing them.

The Realising the Value programme has published an accompanying report that looks at the theories relevant to the ideas outlined in this guide in more depth: Making the change: Behavioural factors in person- and community-centred approaches to health and wellbeing. Readers may find that report useful to read alongside this action-focused guide.

Real-world examples of changing behaviours to spread person- and community-centred approaches

This guide provides examples from the five Realising the Value partner sites, including Positively UK, categorised by the EAST framework. It features a number of low-tech, pragmatic and manageable activities which can increase the spread of person- and community-centred health and wellbeing programmes.

We have taken effective approaches from both academic theory and the five sites and boiled them down to the mechanisms that seem to work most effectively. These are featured in coloured boxes throughout the guide. Practitioners can then incorporate these elements into the design of their own health and wellbeing programmes.

 

To find out more about Realising the Value, check out the website here…

Making the change: Behavioural factors in person- and community-centred approaches for health and wellbeing

Thursday, February 2nd, 2017

Click here to download the report

A key objective of Realising the Value is to change the relationship between citizens and the health system from one of passive patient to active participant. This paper starts from the principle that person- and community-centred health and care approaches require a certain set of behaviours.

This paper aims to understand the drivers of these behaviours and the barriers to achieving them. It presents five broad factors that have been shown to influence engagement and self-management behaviours, and suggests how they can be targeted in order to increase such behaviours. These factors all emerge from robust studies on what influences behaviour.

However, they are not the products of a systematic review of the literature on person- and community centred approaches to health and wellbeing: we have made two deliberate choices that shape the content of this paper.

Firstly, we have taken the view that our target audience wants to put theory into practice (rather than rehearsing theory for the sake of it). Therefore, we have selected factors or concepts that can be communicated and acted upon easily. We have also drawn on interviews conducted during the summer of 2015, with 12 champions of person- and community-centred approaches, to inform the focus of this paper and to ground it in practice. Several of the case studies featured in this paper were identified during this interview process.

Secondly, we have drawn on both health and non-health examples, in order to bring new perspectives to the field. There are many existing reports on increasing self-management in health and we do not wish to duplicate their content. The examples cited from outside the field of healthcare each require a comparable change in behaviour (for example, learning how to do something new in adult education or overcoming the challenge of searching for a job). We believe that looking to other sectors will offer new routes to realising the value of people and communities in a health and wellbeing context.

Finally, we recognise that we are focusing only on a single aspect of person- and community-centred approaches, at the expense of others, such as educating and changing attitudes. We touch on these aspects in the following report, but only if there is clear evidence that they result in changes in behaviour. We believe that this focus on behaviour will bring results.

 

To find out more about Realising the Value, check out the website here…

At the Heart of Health: Realising the value of people and communities

Monday, January 23rd, 2017

Click here to download the At the Heart of Health report

This report explores the value of people and communities at the heart of health, in support of the NHS Five Year Forward View vision to develop a new relationship with people and communities. Our starting point is that health and care services need to work alongside individuals, carers, families, social networks and thriving communities. This report seeks to bring together in one place a wide range of person- and community-centred approaches for health and wellbeing. It provides an overview of the existing evidence base with a particular focus on the potential benefits of adopting person- and community-centred approaches.

We hope this report will help commissioners, policymakers and practitioners to understand the range of approaches available, some of the key components and their potential to improve health and wellbeing outcomes, NHS sustainability and social value.

Person- and community-centred approaches to health and wellbeing have come a long way over the past fifteen years: from pioneering practice situated outside of the mainstream, to a central place in NHS England’s vision for the NHS. There is growing consensus about the need for health and care services to embrace the benefits of taking a more person- and community-centred approach.

Yet, despite this policy focus and many good examples of person- and community-centred approaches being implemented in frontline practice, it is still far from being ‘the way we do things’ within health and care services.

It is important that we now do much more to better understand which person- and community-centred approaches work in what circumstances and how to achieve much greater take up and spread of the most effective approaches.

 

To find out more about Realising the Value, check out the website here…

Women PrEPare

Thursday, December 17th, 2015

Key findings in the report are:

  • Healthcare providers need to recognise all the factors that may affect access and adherence to medication; they should discuss the importance of adherence with women, refer women to peer support, and seek ways to help women take medication successfully.
  • Women want and need access to comprehensive and accurate information about the effectiveness of different types of treatment and prevention methods.
  • Women’s idea of “good HIV prevention” is something long-lasting, quick-acting, discreet and undetectable, that has few side effects and, importantly, does not interfere with sexual pleasure.
  • PrEP enables women to share the responsibility of HIV prevention with their partner(s). Women living with HIV do not want to be solely responsible for preventing transmission to their partners – shared responsibility is important.
  • Women do not know enough about PrEP or how it works. The majority of clinical research and advocacy has centred on gay men, and this lack of involvement in research has led to poor awareness and low engagement with PrEP activism.
  • Women only spaces and strong support networks and are vital in enabling women through effective management of HIV treatment and prevention.
  • Peer support is especially important, as it has a proven track record in helping people better understand and manage their HIV, as well as help them to talk about their HIV to others.

A new report looking at the findings and evaluation of the Women PrEPare workshop that took place in London in July 2015, bringing together 30 women living with HIV from around the UK to look at HIV treatment and its use in prevention and how it specifically affects women.

Women PrEPare came about following the findings from Positively UK women’s conference Women Know Best, which included a recommendation to community based organisations to: “provide opportunities for women to develop and improve treatment literacy and treatment advocacy skills, and emphasise the benefits of participating in medical and social research.”

The workshop, held at Positively UK’s head office in London, was supported by a small grant from AVAC – Global Advocacy for HIV Prevention. It was an exciting day of learning and discussion around HIV, antiretroviral drugs, and new prevention technologies such as Pre-Exposure Profilixis (PrEP), Treatment as Prevention (TasP), and microbicides.

The main aims of the day were:

  • to improve women’s understanding of HIV, ARVs, and new prevention technologies including TasP, PrEP and microbicides
  • to stimulate discussion around, and to identify, the role that new prevention technologies can play for women living with HIV in the UK
  • to increase women’s confidence and skills in advocating for and influencing the access to treatment and prevention agenda

The content and direction of the day was designed by a steering group of women living with HIV.

 

You can view and save the report as a PDF here.

The Manifesto of People Living with HIV

Tuesday, December 1st, 2015

This Manifesto is a campaign for change identified by the communities of people living with HIV around 5 key areas: HIV stigma, Treatments, Engaging, Support Services, and Aging.

Stigma exists in many settings from healthcare provision, the workplace, faith institutes and within our own communities. We seek to create alliances to tackle HIV stigma and change the discourse on HIV, and that people living with HIV are within our communities, are our family and friends.

We will seek the best and most effective treatments for people living with HIV to enable people to live with HIV as a long-term condition. We recognise that people with HIV have a right to make informed choices around treatment and start ARVs when they are ready.

We seek the implementation of a wider approach to tackling HIV prevention including the commissioning of PrEP.

We believe that policies, services and societal attitudes can only be improved with the greater involvement of people living with HIV. We want to develop the skills and knowledge of people living with HIV to meaningfully engage in policy and decision making.

We want multi-disciplinary and integrated care and support. We want clinical bodies, the voluntary and community sector to champion the value peer support across the UK for people living with HIV. We want to see greater access to psychological support services within the clinic and in the community. We seek greater co-ordination and integration to support people living with HIV on the care pathway for HIV and other long-term conditions.

We recognise care should address the needs of specific communities: Gay Men, Heterosexual Men, Young People, and Women.

With rising numbers of people living longer with HIV we need to ensure there are effective support and services to meet the physical, psychological, social and sexual health needs of all the diverse communities of people living with HIV in old age.

You can view and save the report as a pdf here

And download the one page summary here

Women Know Best Report

Thursday, September 24th, 2015

Key findings in the report are:

  • Improve the mental health of women living with HIV by providing well integrated health and social care services, including peer support, which address holistically the specific needs of women.
  • Commission innovative projects that promote the active and meaningful engagement of women living with HIV in the design and delivery of policy and programmes at community and national levels.
  • Train frontline health and social care staff in recognising signs of violence and introduce screening and referral to effective support for GBV in clinical and community settings.
  • Address the lack of gender specific data, and under-representation of women in clinical trials: increase positive women’s treatment literacy and ability to work collaboratively with researchers in designing, implementing and evaluating research.
  • Provide sustained support to networks of women living with HIV to increase their strategic influence and advocate for change that will improve women’s well-being and quality of life.

A new report which addresses the wide range of issues which specifically affect women living with HIV and looks at some of the best way to address them.

This guide has been produced in conjunction with women living with HIV, and provides a helpful evidence base for support organisations and commissioners to improve and expand their support services for women living with HIV. Women living with HIV face a higher risk of poverty, mental ill health, and gender-based violence than the general population, and are more likely than men who have sex with men to be undiagnosed or diagnosed late.

We first outline the key issues facing women living with HIV in the UK today. We showcase examples of best practice from throughout the UK across a range of sectors that have been successful in tackling these issues and improving women’s health and well-being. Finally we end with recommendations for commissioners, voluntary and community groups, medical and social researchers, and healthcare providers to improve policy and programmes.

In December 2014, Positively UK hosted the “Women Know Best” conference in London, which brought together women living with HIV from across the UK. Women discussed the key issues that affected their lives, shared experiences, and developed recommendations to improve services. We then built on the ideas from the conference, and findings from a literature review, to produce this bottom-up report which is grounded in the real-life experiences of women living with HIV.

Evidence from the conference and literature review highlighted a number of key issues for women living with HIV. There were several areas in which we could not identify current best practice, and that deserve special attention to develop and establish support. These include services for lesbian and bisexual women, trans women, sex workers, and women within faith communities.

 

You can view and save the report as a PDF here.

Positive Change

Tuesday, June 30th, 2015

Key findings in the report are:

  • The Department of Health should, as part of its review of the NHS Outcomes Framework, ensure that any additional indicators for ‘Domain 2’ (Enhancing quality of life for people with long term conditions) recognise the need to deliver improvements specifically in HIV care.
  • All HIV specialist clinics should implement a nationally agreed set of HIV-specific patient experience measures, building on the ‘Positive Voices’ work by Public Health England.
  • NHS England’s Insights and Feedback team should consider the opportunity of general surveys of patient experience and outcomes being fully harnessed to collect information about HIV care (for example the national GP survey could capture anonymous information about HIV status and experiences of care).
  • NHS England should work closely with people living with HIV to develop the use of patient reporting tools – PREMs and PROMs – in HIV and ensure that any monies earned through rewards for delivering high quality care are fed back to the services that delivered them.
  • The HIV community should build a consensus regarding data ownership and on how data can be shared effectively, in order to drive improvements in care across providers whilst ensuring that patient confidentiality and protection is maintained.
  • NHS England should work with the HIV community to ensure that information is shared, effective mechanisms for patient involvement are in place and improvements in health and social care are informed and driven by people living with HIV.
  • Public Health England should, through annual HIV reporting ensure that data is provided to Health and Wellbeing Boards, Directors of Public Health and NHS England to enable effective commissioning. The data provided should contain both prevalence data and measures of patient experience, aggregated at national and local levels.
  • NHS England should ensure that HIV testing of people from vulnerable populations is offered as a mandatory feature of testing for sexually transmitted infections. This must be reflected in NHS contracts, for example, the QOF of the GMS contract.
  • NHS England should ensure people who are newly diagnosed with HIV receive the appropriate information about treatment, care and peer support at the point of confirmed HIV diagnosis.
  • NHS England’s Clinical Reference Group for HIV should include measures of patient experience in the HIV Quality Dashboard to provide a complete picture of whether HIV services are responding to the needs of patients.
  • NHS England should strengthen incentives through the use of CQUIN payments and the QOF to measure and improve patient experience and strengthen communication between HIV clinics, other specialist providers and GPs.
  • NHS England should ensure GP practices in areas of high HIV prevalence have sufficient knowledge to treat and care for people living with HIV in a way that meets their needs as identified through PROMs.
  • The HIV community should in partnership with GPs, develop proposals for integrating primary care and HIV services that would improve the care of people living with HIV.

A new report highlighting the existing and new challenges in HIV treatment and care that people living with HIV are facing today.

Planning effective care for people living with HIV requires several factors to be considered. People living with HIV are often from vulnerable groups that have experienced discrimination, including gay men and migrant communities. HIV is still met with stigma in society and within healthcare settings, negatively impacting upon people’s experience of care and acting as a barrier to accessing the care required. HIV testing, treatment and care are now managed by multiple agencies across NHS England, Clinical Commissioning Groups and local authorities.

To tackle these issues we held two events: a workshop with people living with HIV from across England; and a roundtable with representatives from patient groups, NHS England, Public Health England, HIV specialist care providers and local authorities. Through this we identified six areas for improvement:

  • Access to HIV testing and diagnosis to reduce late diagnosis and improve health outcomes for people living with HIV
  • Patient involvement in decision-making allowing people to make the right decisions for their care, particularly in managing multiple long-term conditions
  • Effective medicines management through co-ordination across specialist and primary care services
  • Access to support from peers in how to manage an HIV diagnosis
  • Care for comorbidities and integration of HIV with other special ist areas such as mental health
  • Provision of high quality care homes and appropriate end of life care for the ageing HIV population

It is essential that people living with HIV have access to and receive good health and social care, have good experiences of care and achieve optimum health outcomes. Currently data focuses primarily upon clinical outcomes of care. In order to assess and improve the patient experience we need to introduce new mechanisms for assessing the quality of care and the outcomes achieved from a patient perspective. These should be centred upon:

  • Co-ordination of care between HIV specialists, primary care and other specialist disciplines
  • Participation of people living with HIV in their own care
  • Mechanisms to assess quality of care in terms of both experience and outcomes
  • Measures to identify and tackle HIV related stigma within healthcare settings

Set out in this report is a summary of recommendations to achieve this. Data gathering and analysis can be costly and time consuming, and we have wherever possible sought to build upon established systems such as the General Medical Services (GMS) contract, and ongoing and important work in development such as the ‘Positive Voices’ survey and the development of Patient Reported Experience Measures (PREMs).

 

You can view and save the report as a pdf here.

 

Positively UK’s Statement on PrEP

Wednesday, April 1st, 2015

 

Positively UK welcomes the findings from PROUD and IPERGAY studies, which demonstrate the high effectiveness of using Pre Exposure Prophylaxis (PrEP) as an effective tool for HIV prevention and promoting the health of gay men and men who have sex with men.

HIV transmissions continue to rise within the UK demonstrating that current interventions alone are not effective and new resources are required.

Positively UK joins other UK based HIV and LGBT organisations in urging the NHS to speed up the approval process and make PrEP available.

HIV is a complex area and achieving good sexual health for all requires a range of interventions, this include but are not limited to sex and reproductive education at appropriate ages including within schools, condom distribution, psychosexual support, Treatment as Prevention for people living with HIV, health and social care to reduce risk and vulnerability. Interventions must also address the wider determinates of health and behaviour such as poverty, mental health, and drug and alcohol use. PrEP is one intervention within a larger toolkit as a means to reduce rising HIV transmissions. Only when all these tools are sufficiently resourced will we tackle HIV.

Positively UK urges more research to be undertaken on the implementation of PrEP on key populations and other vulnerable groups such as women and migrants.

Education around PrEP is necessary both to raise awareness and to ensure people can make informed choices, including implications of its long-term use. There is also a need to support longitudinal studies including impact on maternal health, toxicity and resistance. It is crucial that people who choose to use ARV’s for prevention have the information and support to understand the potential impacts of both its short-term and long-term use.

 

The Impact of the Welfare Reform on People Living With HIV in England

Tuesday, April 1st, 2014

Key findings in the report are:

  • The number of benefit changes individuals go through make a significant difference to their health and well-being.
  • The medical assessments of PIP and ESA are failing to addressing the psychological impact of HIV and the variable impact of the condition on day-to-day life.
  • There are significant reductions in the services offered by HIV charities.
  • Women from black and minority Ethnic communities, Latin Americans and white gay men over 50 are hardest hit by welfare reform.
  • There are serious mental health issues caused by the shame and stigma that respondents feel when applying for benefits.

A new report highlighting the damaging impact welfare reforms are having upon people living with HIV.

Based on a survey of 287 people diagnosed with HIV across England the report found that two-thirds of were affected by benefit changes, with nine out of ten reporting poorer health and limited access to HIV care as a result.

Handling of the reforms is criticised in the report, in particular assessments and their failure in supporting some of the most vulnerable in our community. In the words of one person living with HIV, “I had to appeal against my medical assessment. When it went to appeal it was given to me and not only that they decided I should have been in support group of ESA. This is so stressful and makes problems worse when having to appeal and money reduced until it is sorted.”

As a result the Counterpoint Policy Alliance is launching a new campaign ‘No-one should leave the clinic hungry’ to raise awareness of these problems. “We need to bring this issue to the attention of the NHS, MPs, Local Authorities and all those who can help change these punitive policies. Anyone who doesn’t have enough to eat will suffer poor health, and this is worse if you are living with HIV in getting the right foods to keep fit and healthy. If we don’t act now this problem could become a crisis for many people living with HIV.”

The report was carried out by the Counterpoint Policy Alliance, a collaboration of three leading HIV charities: Naz Project London, Positive East and Positively UK.

You can view and save the report as a pdf here.

Improving well-being

Wednesday, January 22nd, 2014

“..without Positively UK I would still be struggling…”

 

 

Downloadable .pdf version of Improving well-being: The effectiveness of peer support

The findings in our new report, Improving well-being: The effectiveness of peer support, are the result of research conducted to give us an in-depth insight into the role Positively UK’s peer-led services play in enabling people to better manage and improve their health and well-being.

The research focused on four key areas:

  • What is the perception of Positively UK’s peer support?
  • How does our peer support enable people to better manage their health?
  • How does this support complement clinical care?
  • How does this support impact on well-being?

We believe access to good quality peer support is vital for people living with HIV. This report sets out to demonstrate that, and how our work contributes to both the NHS Outcomes Framework in managing long-term conditions, and Public Health Outcomes Framework in improving well-being. We hope this report will be of benefit to all Positively UK’s donors in demonstrating the value of their investment, and as a useful resource to anyone seeking to establish local peer-led services. Nobody should face HIV alone, and we hope this research encourages everyone to understand the value of peer support now and in the future.

 

This project has been supported by an educational grant from MSD, and the secondment of A K Gilbert, researcher, and employee of MSD

States of Mind

Friday, September 20th, 2013

People living with long-term medical conditions experience higher levels of poor mental health and emotional well-being, and this is exacerbated for people living with HIV. This report, based on a survey of nearly 200 people living with HIV demonstrates the impact of mental health for people living with HIV socially and in managing their medication and highlights the lack of effective support. It concludes with recommendations to improve support and resources for people living with HIV to better manage emotional well-being.

You can view and save the report as a pdf here.

The Pregnancy Journey

Friday, September 20th, 2013

‘The Pregnancy Journey – a practical guide’ is full of information to help you have a healthy, happy journey through pregnancy to baby and beyond and includes many of the questions that are asked by women living with HIV who are planning to have a baby or are pregnant.

Our From Pregnancy to Baby & Beyond project supports prospective and expectant parents affected by HIV to achieve the best start to family life and is delivered by our Mentor Mothers, who have all started families whilst living with HIV themselves.

If you would like more information about HIV and Pregnancy or would like one-to-one support around starting a family, then give Angelina a call on 02077130444 or email her at anamiba@positivelyuk.org

HIV Behind Bars

Friday, September 20th, 2013

People diagnosed and living with HIV in prisons require specific support in managing their health and well-being. Positively UK’s review of health care and support provision in prisons identified cases of sub-standard healthcare with people refused HIV medications, denied confidentiality and experiencing discrimination.

Our report highlights these failings, alongside areas of good practice undertaken by prison healthcare teams, HIV clinics and the voluntary sector, and recommendations that need to be introduced to ensure people living with HIV in prison receive healthcare to quality standards of care.