Patient experience and the NHS Long Term Plan
Picker was founded with an understanding that to be effective, care must be delivered in a way that is sensitive to patients’ concerns and comfort; responsive to their personal values and preferences; and involves patients, their families, and their carers in shared decision-making. In other words, putting patient experience at the forefront of care.
Why does patient experience matter?
Aside from a moral argument to provide good experiences of care, we know that patient experience has clinical benefits on processes and outcomes and so is good for the NHS and patients in and of itself. A systematic review (a way to combine results from different studies to provide strong evidence) of 55 studies found that people got better, followed treatment guidance, lived healthier lifestyles, and didn’t have to use healthcare providers (GPs, nurses, hospitals) so much if they had better experiences of care.  Importantly, better patient experience was linked to better patient safety and better effectiveness of care. Our work with The King’s Fund found associations between workforce factors (staffing levels, sickness absence, spend on agency staff) with staff experience, and staff-reported experience of care quality with patient experience.  In addition, patient experience is negatively associated with waiting times,  and longer waiting times are associated with poorer outcomes. 
What is NHS England’s position on patient experience?
NHS England’s 2008 High Quality care for all: NHS Next Stage Review made recommendations that quality of care should be at the heart of everything the health service does, and that patient experience should be placed with patient safety and effectiveness of care as the measures of that quality.  These recommendations were accepted and built-in to the NHS working approach.  2014’s Five Year Forward View  highlights that “The definition of quality in health care, enshrined in law, includes three key aspects: patient safety, clinical effectiveness and patient experience. A high quality health service exhibits all three.” (Box 1, p8)
The NHS Long Term Plan,  published in January 2019 with a vision for how care will be delivered over the next 10 years, has few explicit references to people’s experiences of care in its 136 pages, or to the mechanisms that will be used to improve people’s experiences.
The NHS Long Term Plan has priorities for action for improvement to care in what it names our ‘biggest killers and disablers’: “…cancer, mental health, multimorbidity and healthy ageing including dementia, while intensifying the NHS’ focus on children’s health, cardiovascular and respiratory conditions, and learning disability and autism, amongst others. It also affirms the importance of therapies and planned surgical services for conditions that limit independence and affect quality of life.” (p44)
Given that patient experience is part of the definition of quality or care, and that it is linked with better outcomes, what do we know about the experiences of care for these priorities for action so that care quality can be best improved? Our work at Picker provides insights for several of these conditions.
What does Picker know about patient experience for these ‘biggest killers and disablers’?
Through our work with NHS providers (nationally and individually) on services for inpatients, outpatients, emergency departments, maternity, children and young people, and mental health, and also through our bespoke research to understand patient and staff experiences, we have found common themes running through people’s experiences of care.
With some exceptions, people tend to be happy with the clinical aspects of care (the operation, the treatment plan, the particular medication).  However, poor experiences of continuity of care (how well the different parts of the health service work together to provide care), and waiting times are common. People are often frustrated by having to repeat their story to several healthcare professionals due to a lack of data sharing (especially between hospitals and GPs), and due to staffing in GP surgeries meaning they frequently see a different person each time. In each case it means that care co-ordination is reduced, and experiences decline.
With increasing waiting times, people are dissatisfied with the services and can experience poorer outcomes. Where a disease is particularly fast acting this is even more marked, for instance in some types of cancer. For example, only around 20% of people with pancreatic cancer survive for a year or more after diagnosis because by the time someone is diagnosed, the cancer can be quite advanced.
The experiences of clinical and logistical aspects of care are accompanied by relational aspects: how people interact with each other. It is common to hear about a lack of sensitivity in giving a diagnosis, or that explanations were not given in a way that was easily understood, or that information was not available (particularly on medications and their side effects). We have seen instances where services provide leaflets on discharge and patients report a poor experience of information availability because it was not tailored to their circumstances, or even to their language. These relational aspects of care can impact on the mental health and wellbeing of a patient, and their families and carers, and this impact can vary over time (the initial shock of an adverse event differs from longer term impacts of living with the consequences, for example in stroke, heart attack, and major injury).
The NHS Long Term Plan also includes an ambition to provide education and exercise programmes to tens of thousands more patients with heart problems, preventing up to 14,000 premature deaths. We have found that a quarter of people impacted by heart problems had a high need for help with making changes to exercise, and that people wanted tailored information about what is appropriate for them.
What can be done to ensure positive patient experience?
Healthcare providers and policy makers will need to use several strategies to ensure that patient experiences are maintained and improved, thereby ensuring high quality care provision. These fall into the same aspects of care that impact experience:
Provide high standards of service delivery: that is treatments such as surgical procedures are safe and effective. Ensure that staff are appropriately trained and supported, and can raise concerns without fear of repercussions.
Addressing continuity of care so that information flows more easily between the different parts of the healthcare service will continue to be important. Coupled with this will be setting appropriate expectations of likely wait times: no one wants to be told they’ll be referred and not hear anything for months. It would be far better to be told at the outset “We expect you to be contacted by April”, which leads on to the relational aspects of care
Use an individualised approach to communication: check preferences and needs. Don’t assume that needs are met, or are unchanging.
Many of these strategies fall under our own Principles of Person Centred Care, which were developed under the knowledge that understanding and respecting peoples’ values, preferences and expressed needs is the foundation of person centred care. Further details of the Picker Principles are available on our website. We recommend that everyone involved in the design and delivery of care from local to national level should familiarise themselves with them, as they provide an outline of what a truly person-centred service should look and feel like.
 Doyle C, Lennox L, Bell D. 2013. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 3:e001570. doi: 10.1136/bmjopen-2012-001570 https://bmjopen.bmj.com/content/3/1/e001570
 Sizmur S, Raleigh V. 2018. The risks to care quality and staff wellbeing of an NHS system under pressure. Picker & King’s Fund. https://www.picker.org/wp-content/uploads/2014/12/Risks-to-care-quality-and-staff-wellbeing-VR-SS-v8-Final.pdf
 Ipsos MORI. What We Want From Our Public Services. London: Cabinet Office, 2000. https://www.ipsos.com/ipsos-mori/en-uk/what-we-want-our-public-services
 Plunkett PK, Byrne DG, Breslin T, et al. 2011. Increasing wait times predict increasing mortality for emergency medical admissions. Eur J Emerg Med 18:192e6. https://insights.ovid.com/pubmed?pmid=21317786
 High Quality care for all: NHS Next Stage Review final report. https://www.gov.uk/government/publications/high-quality-care-for-all-nhs-next-stage-review-final-report
 Government response to the Health Select Committee report ‘NHS next stage review’ March 2009. https://www.gov.uk/government/publications/government-response-to-the-health-select-committee-report-nhs-next-stage-review-march-2009
 NHS Five Year Forward View. https://www.england.nhs.uk/five-year-forward-view/
 NHS Long Term Plan. https://www.england.nhs.uk/long-term-plan/
 NHS Surveys. http://www.nhssurveys.org/