Portsmouth City Council (PCC) recently ran a survey formulated by American private health firm, Insignia Health, on ‘patient activation’. A member of S&C’s Reclaim The News team (who wishes to remain anonymous) has investigated what ‘patient activation’ really means for Portsmouth residents. Additional reporting by Sarah Cheverton.
The only information provided to residents about the context or purpose of the survey was the following:
The way we deliver health and social care is changing. Part of this change is about making sure that the people we support receive personalised care that works for them. This survey will help improve our understanding of how confident the people of Portsmouth are about making choices about their own care.
The survey relates to a broader NHS policy called ‘patient activation’, described by the NHS as ‘the knowledge, skills and confidence a person has in managing their own health and care.’ Guidance from NHS England shows how ‘patient activation’ groups people into four categories, ranging from ‘not activated’ for patients deemed ‘disengaged and overwhelmed…[These] individuals are passive and lacking in confidence. Knowledge is low, goal-orientation is weak and adherence is poor’, through to ‘fully activated’ patients who are deemed to be ‘maintaining behaviours and pushing further.’
The Kings Fund report that 25-40% of the population have ‘low levels of activation’ and face ‘major barriers’ to managing their own health.
PCC’s ‘Different Conversations’ survey utilised the Patient Activation Measure or ‘PAM’ ® tool, which can only be used under licence from private US health company Insignia Health. The company sells a range of products related to ‘patient activation’ which it describes as ‘vital to success in a value-based health system’. On its website Insignia Health promises that ‘PAM®-based solutions have the perfect mix of science and action to make a positive difference… in your members’ lives, and to your bottom line.’
PCC made no mention of ‘patient activation’ in its introduction to the survey. Local people were only made aware of the involvement of Insignia Health at the end of the survey.
After residents raised concerns about the involvement of a private healthcare provider in surveying local NHS patients, PCC released a statement via their Facebook page:
Insignia designed the survey and have agreed organisations across the countries [sic] like councils and parts of the NHS can use the survey as long as we acknowledge them as the original designer. We’d like to reassure people Insignia has nothing to do with the delivery of the survey, it is being managed by Portsmouth City Council. The findings of the survey will be shared with our local NHS partners. It will not be shared with any other parties.
An FOI request revealed that PCC has been using Insignia’s survey tools since autumn 2015, including for a health and social care practitioner survey, within Public Health and Wellbeing, and for ‘specific project aims connected to developments from the Integrated Personal Commissioning programme.’
PCC confirmed that the local authority ‘do not pay anything for the current use of PAM and Carer PAM [®] survey tools…because of our participation in the Integrated Personal Commissioning programme as a demonstrator site.’
In 2016, the NHS purchased ‘1.8m licences for the PAM [®] tool, which were made available to key NHS change programmes’. One such licence was provided to PCC to lead an ‘Integrated Personal Commissioning’ (IPC) project with partner organisations including NHS Portsmouth Clinical Commissioning Group (CCG), and NHS Solent.
IPC aims to ‘increase activation levels and enable individuals to self-care more effectively in Portsmouth.’ It includes the use of ‘personal health budgets’ and explores the impact of Integrated Personal Commissioning on local patients, including four specific groups: older people with long-term medical conditions, adults with a learning disability, children with special educational needs/disabilities and adults with mental health problems. The project includes the use of a ‘smartphone app to help people monitor things like smoking, alcohol consumption and exercise.’
PAM® and Integrated Personal Commissioning are part of the NHS Five Year Forward View, which is being rolled out nationally via the Sustainability and Transformation Plan (STP), reported on S&C in 2016.
The STP for Portsmouth covers Hampshire and the Isle of Wight and responds to the financial pressure on NHS services in the region, most notably £577 million of NHS cuts required by 2020/21 compared to current levels of spending. This is alongside £192 million of cuts to adult social care across Hampshire, Southampton, Portsmouth and IOW councils: a total of £769 million in cuts to the area’s NHS and social care by 2020/21.
On PCC’s Facebook page, local residents expressed concerns about the involvement of Insignia Health.
One user asked, ‘why does the survey ask if you would be willing to do a financial assessment when going for treatment? If this is for NHS eyes only then why would that question be asked? The NHS is a publicly funded service free at the point of need. It’s basically a survey designed to see if people are willing to ‘manage’ their own treatments.
‘Could you clarify that this is not for privatisation stages and only for our NHS, a publically [sic] funded health care service.’
PCC’s reply denied that the survey was related to privatisation.
‘The survey is designed for both health and social care users. The question you’re referring to is asking whether people are confident about completing an initial financial assessment online, because financial assessments are required for some social care services. The information gathered is only for use by the council and local NHS partners, and isn’t related to privatisation.’
Portsmouth residents are not alone in their concerns. Across the UK, NHS staff and patients are worried about the ‘self-management’ of long-term health conditions underpinning both ‘patient activation’ and ‘personal commissioning’ or ‘personal budgets’.
Research carried out in 2015 by public health expert Professor Alex Scott-Samuel explored attitudes to personal health budgets among healthcare experts, healthcare providers, patients and support groups. The research, published in the International Journal of Health Services revealed that while some people see personal health budgets as ‘a welcome personalization of health care that increases people’s control over their health’, these measures ‘are being introduced at a time when rapid privatization of the NHS is taking place and when restrictions are being placed on people’s access to health care.’
‘As a result, many view their introduction as a diversionary gimmick designed to help pave the way for the conversion of the NHS into the insurance-based system, which many believe is the intention of the U.K. government.’
While NHS care is provided free at the point of need, social care is means-tested, leading to concerns that the integration of the NHS with social care will lead to privatisation.
In 2016, one of the architects of personal health budgets, Simon Duffy, highlighted the potentially positive uses of Personal Health Budgets (PHBs), telling Open Democracy, ‘Sometimes it is helpful to individualise healthcare funding and give control to the person or their agent. So, as PHBs do provide this option, I support them.’
However, he also warned that within the context of austerity, PHBs could do more harm than good. ‘Government has certainly used personal budgets to thoughtlessly transfer risks and burdens to people and families, without the right kind of support’, he said.
John Lister, director of campaign group London Health Emergency has also criticised personal budgets and other policies linked to ‘patient activation’, such as NHS vouchers, as destabilising to the NHS and warns that they could be used as vehicles for further NHS privatisation.
Writing in 2016 on the government’s proposal to introduce ‘Personal Maternity Budgets’ to pregnant women to spend as they wish on their maternity care – which has since been implemented – John Lister stated:
‘The proposal has all the disadvantages of other “personal budget” and “NHS voucher” schemes – in that it opens the way to individual “top-up” payments, widespread full-scale charging for health care, and private health insurance.
‘Like personal budgets it would take money from core budgets for services, without evidence or systems to ensure it will be spent appropriately – and leaving an under-resourced service to deal with all the more demanding cases – and those that develop later complications.
‘The NHS England statement explicitly says that any woman needing urgent care because of complications would get it regardless of whether their personal budget had been spent.’
Portsmouth Clinical Commissioning Group (CCG) was one of the ‘Maternity Choice and Personalisation Pioneers’ selected by NHS England to pilot Personal Maternity Budgets in 2016.
S&C have asked PCC for a statement on the results of the ‘Different Conversations’ survey and the outcomes of their three-year Integrated Personal Commissioning programme. We will report back if/when we receive a response.
What do you think? Is patient activation a good thing for local NHS patients or not? Have you been given a Personal Budget to help you manage your health care or maternity services in Portsmouth and the surrounding area, and if so, how have you found the experience? Let us know your thoughts in the comments box below and on our Facebook and Twitter pages.
This story is part of our ongoing series from our #ReclaimTheNews team, a group of local residents trained in investigative journalism in partnership with The Centre for Investigative Journalism. The group now forms S&C’s Community Reporting team. Expect more stories from them in the coming weeks and help spread the word by sharing their articles with your friends and networks.