Understanding and measuring people’s experience will go a long way to improving mental health services, write Dr Andrew McCulloch and Chris Graham

Mental health illustration

Mental health illustration - NOT FOR REUSE

While there are many good quality mental health services in England, individual experiences are hit and miss.

‘A whole person approach to structuring and delivering mental health services must be realised’

The recent Care Quality Commission NHS Community Mental Health Survey, designed and coordinated by Picker Institute Europe, shows numerous problem areas in people’s experiences of mental health care. In fact, some aspects of care are consistently poor, with the majority of service users reporting poor experiences in certain areas.

Following significant reductions in mental health services, and at a time when urgent hospital admissions are higher than ever, we are stuck in a counter-productive cycle; service users wait too long for access to treatment, often resulting in their mental health deterioration, which further leads to or exacerbates co-morbid health problems, resulting in increased hospital admissions.

Once in hospital, a cycle of diagnostic overshadowing takes hold, with one condition taking precedence over another, as the care becomes focused on the most obvious, treatable, symptoms – often relating to the patient’s physical health or mental wellbeing, rarely both.

The primary focus can end up being on getting the person discharged and freeing a bed, rather than understanding their longer term priorities or addressing their wider needs.

Case study: Raising awareness of services

In 2012, Cumbria Partnership Foundation Trust commissioned Picker Institute Europe to collect patient stories from “active” dementia service patients, or more specifically, those currently receiving care or treatment from the memory service team, and their carers.

The aim of the project was to gather qualitative information that could support quantitative data that had already been collected, and to contribute to the CQUIN measures.

The feedback was collected using a face-to-face interview, and used an intimate sample of 18 participants. Such a small sample can in no way be seen as reflective of the views of all dementia patients. However, the common themes revealed throughout, and the subsequent recommendations made, proved invaluable to the Cumbria partnership when reviewing service provision and access.

For example, specialist services including the inpatient and community based services such as the community mental health team were praised and seen to be highly valued and appreciated by all participants; this was true particularly for the sensitivity and understanding shown by the staff. But information provision and access to the range of health and social care options available to both service users and their carers was deemed “patchy” and “too informal”.

Many of the people who really needed the services were unaware of them and simply did not use them.

Other highlighted issues included dissatisfaction with reduced services such as fewer home visits, memory groups and day centres – all areas that those who were able to access and use them spoke the highest of.

The revelation that carers felt that it was important for them to be proactive in order to get the information and support needed to fulfil their roles (if they weren’t they probably wouldn’t get it), also showed service providers that more work was needed to improve carer support services (see case study below).

Being whole person-centred

A recent Royal College of Psychiatrists report states that for care to be effective, the focus must be on “whole person care”. This means treating individuals to improve their health and wellbeing without trying to bracket out their physical and mental conditions, which are ultimately intertwined.

‘Creating a variety of feedback materials provides opportunities for people to talk freely about their experiences of care’

Yet, currently, as underlined by the Community Mental Health Survey results, we have a divide between the clinical agenda and what service users want and need from their care.

It should go without saying that mental health users have similar aspirations to anyone else to live healthy, fulfilling lives. The role of person centred services should be to support and enable users to achieve these goals, rather than to focus on “treating illness”.

For this divide to be bridged, a whole person approach to structuring and delivering mental health services must be realised. To achieve this in practice, we must engage with the people receiving care and use these interactions to both understand and measure their experiences.

Evidence to act

The collection of a reliable and robust library of evidence will allow healthcare providers to act on the findings and realise service expectations.

‘For data to have any real impact or meaning, reports must always be supported with targeted recommendations’

Creating a variety of feedback materials to suit individual preferences and needs provides opportunities for people to talk freely about their experiences of care.

Since individual communication is so varied, and different age groups and demographics naturally express themselves differently (verbal, text, real time, etc), collating people’s feedback can be problematic in itself.

However, it is even more so when canvassing people with mental health problems, with the care pathway often being complex and challenging to navigate for both patients and their care providers.

Multidimentsional conditions

Mental health conditions are themselves multidimensional, spanning a huge range, from the more episodic/acute conditions to bereavement counselling and developmental conditions such as autism. A one size fits all approach to measuring people’s experiences just does not work.

‘Providers think they know what patients want, but the gap between understanding and getting it right can be bigger than we think’

It is important to ensure that just like the care itself, survey research tools are person centred and tailored towards both the stage of care and the type of condition the person presents with.

But simply collecting the data is not enough, nor is it the main purpose of patient experience research. For data to have any real impact or meaning, reports must always be supported with targeted recommendations and guidance that allow the affected trust or organisation to look intensively at their feedback results and what their patients/service users really think of care.

Most importantly, the recommendations should show where and how improvements can be made to improve care quality.

Case study: Improve carer support

While the project with the Cumbria Partnership looked at both the experiences of people with memory problems and their carers, another project with Oxleas Foundation Trust in the boroughs of Bexley, Bromley and Greenwich focused specifically on carer feedback, their perceptions of the carer support services available, and whether they were helping them in their caring roles.

The survey yielded a response rate of 39 percent; almost half of respondents cared for someone aged 75 or over and the most common conditions were either a mental health problem or dementia.

The findings showed that people were having both positive and negative experiences, with the majority feeling that both they and the person they care for were treated with respect and dignity.

The more negative experiences were identified in carers of younger patients, who reported most that there was room for improvement with information provision and providing better support for them as carers.

Based on these findings and the full survey results, recommendations were made to improve information provision and patient and carer support, so that the patient is better equipped to manage their condition and to lessen the burden on their carer.

The long term benefit of the survey was identifying and sharing best practices across services. As a result, the community health service teams have started identifying and registering carers and planning to carry out carer’s assessment, and a few mental health service teams have been running events and training sessions for carers.

Oxleas is also developing a new strategy to work towards changing whole team cultures away from “just treating the individual” to “working in partnership with families and significant others”.

Voice of the people

Healthcare providers often think they know what patients want, but the gap between understanding and getting it right can be bigger than we think. We only have to look at the Community Mental Health survey results to see that.

‘By building on the growing body of evidence about how to refocus on recovery, we can make a difference’

The survey found that while about three quarters of service users felt listened to and treated with dignity and respect by their care giver, only a third said they were adequately involved in planning their own care and support.

Equally disappointing, only 55 per cent of service users said that the people close to them had “definitely” been involved as much as they would like to be in the care process.

In short, we are not yet getting it right.

Equal access

Where do we go from here? A really effective, modern and person centred health service should give everyone equal access to physical and mental healthcare, and it should not attempt to treat their conditions in isolation.

Recovery focused mental health services no longer prioritise containment and control, but put people in charge of the care they receive, build opportunities for a life outside illness and instil hope for the future. This can only be achieved by sharing power and decision making equally.

We know that services across the country are adopting this approach. The survey results show that we still have a long way to go before it becomes the norm, but by building on the growing body of evidence about how to refocus on recovery, we can make a difference to people’s lives nationwide.

Even though mental health services in England remain heavily invested in and well led, compared to equivalent services in other countries, this gap between the care that patients’ want and need, versus what they are actually getting, differs significantly and must be bridged.

It is surely only by focusing on service users’ priorities and intervening earlier in the cycle that we will be able to move towards bridging this gap.

Andrew McCulloch is chief executive and Chris Graham is director of research and policy at Picker Institute Europe