Health CommitteeWritten evidence from the Patients Association (LTC 69)

There is a need to address the often poor communication between different care providers. Patients frequently contact us to complain that their care is disjointed. They tell us that there are failures of communication between different departments and varied quality of treatment for those that require a multiple disciplinary approach to tackling their medical needs. This causes stress for the patient and can have detrimental health implications.

Effort should be aimed at easing the patient transition between care settings. This is particularly acute for patients moving between hospital and a care home setting. Relatives of patients who have been transferred to care homes from hospitals tell us that often they arrive at the care home without a care package in place or without required modifications being carried out.

As GPs take on more responsibility for commissioning patient care, we’re concerned about their level of experience and understanding of commissioning specialised services where the needs of patients with multiple long-term conditions may be more complex.

GPs as commissioners may also find it challenging to commission services for rare conditions or conditions that they have no experience of treating or rarely encounter. There is a danger that these services may be commissioned in a fragmented manner.

NHS IT programmes have been plagued by severe problems and in order for integrated services to be effective there needs to be compatible IT support systems between providers. With increased competition, and suppliers/providers of services, this could become increasingly difficult.

Patients with long-term conditions and those with complex conditions (ie the elderly and those with learning disabilities) are often the heaviest users of the NHS. It is essential that the voices of these patient groups—who are often the hardest to reach groups—are heard by decision makers and service providers.


I. The majority of patients want to be treated as quickly as possible in hospital and then be back in their own homes, amongst family and loved ones. With a move to local control of health and the rise in the elderly population, we need to make sure the NHS adapts to fulfil this need. Inpatient care and local services must serve the needs of patients so that they receive the best treatment possible and appropriate follow up community care. It may be beneficial to integrate and consolidate services into fewer sites and centres of excellence, as long as this does not restrict services available to patients. We must never forget that by merging services to be provided from one site, there will be patients who may struggle to get to them because they are too far away. It is vital that services reflect the need of the community and are available in a variety of formats including respite care and community hospitals. The Department of Health must not be afraid of making difficult decisions that will ultimately mean better and more efficient services for patients.

II. However, inequalities continue to plague and distort healthcare across the UK. The link between early diagnosis and life expectancy in relation to the relative level of an area’s deprivation is truly alarming. On several occasions public health experts have warned that the current reforms could make health inequalities worse. The Government must make sure that the pursuit of its reforms does not get in the way ensuring that ALL patients have access to the treatment and care they need.

III. As we move towards a system built around the patient’s needs, with adequate local support and provision to help them diagnose, manage and live actively with their conditions, we must ensure that we address the increasing prevalence of treatment rationing that leads in many cases to the creation of avoidable long-term health issues. Every day our helpline hears from patients that can’t hear because they have to wait weeks for an audiology appointment, can’t see properly because they have been denied a cataract operation, can’t work because they are in pain and can’t walk because they have been denied hip, knee or podiatric treatment. This is the human cost of a long-term condition, where treatment is not integrated, financial motives are put above patient care and ongoing support is lacking. How can we expect people to live a full and active life if they are burdened with crippling pain or unable to move about without suffering?

IV. Patients should never be denied treatment for non-clinical reasons. There may be some instances where lifestyle choices may need to be taken into consideration when deciding if surgery is clinically appropriate, but the breadth of these restrictions is worrying. We must ensure that these restrictions are not being put in place as an excuse to save money by denying patients the ability to access treatment.

V. There are four main areas of concern relating to the management of long-term conditions that we feel should be a focus of the inquiry:

Integration and continuity of care.

Access to General Practitioners.

Supporting and informing patient’s decisions.

Recognition of pain as a long—term condition.

1. Integration and Continuity of Care

1.1 The Government’s commitment to improving the care of patients with long-term conditions is to be welcomed. One key issue is that many patients find the pathways for chronic conditions confusing and muddled. This is particularly true for chronic pain. The Patients Association published a report, Public Attitudes to Pain, in 2010 which found that for the majority of chronic pain sufferers, there is no clear care pathway for chronic pain. This is despite evidence from the Chief Medical Officer’s report in 2008 that 7.8 million people in the UK suffer from chronic pain.

1.2 We need clearer care pathway for all conditions which is discussed and agreed with patients at the outset of their treatment so that they understand what is happening to them and what to expect from their treatment. Any changes that might need to happen to the care pathway must also be discussed and agreed with patients.

1.3 The lack of integrated provision and continuity of care between providers is a major obstacle in the provision of quality care for sufferers of long-term conditions. When patients are being moved between care settings, we have heard that oftentimes their medical records and information about their ongoing care are not properly passed on. There must be effective systems in place to ensure that when patients are moving between care settings, the information about their care follows them and that all professional involved in their care are fully prepared to treat their condition holistically.

2. Access to General Practitioners

2.1 We already hear from patients who have difficulty accessing GP services, in particular there are issues with getting appointments. GP’s first and foremost duty and role must be to provide high quality medical care for their patients. With all these different roles pulling them in all directions, we are concerned that many GPs will not have the time to fulfil them all.

Case Studies:

A patient who contacted us was told that he could only discuss one item within a five minute appointment. He felt that this was restrictive and that the practice constantly puts pressure on patients to see the practice nurses. He feels it is a bit intrusive and feels it also puts receptionists under increased stress, because they are forced to tell the patients.

One patient told us that he had been trying to get a GP appointment for three and a half weeks and has been unable to manage it due to their obscure booking system and another caller problem with the GP appointment system as he commutes to work and cannot phone at 8:30, even when trying to reason with them they will not move and this is the only method which they use for appointments.

Another patient who suffers from a chronic condition told us that they operate a 10 minute limit on the time available for consultation. When/if they do see their regular GP then it takes the entire 10 minutes to update her on her condition and if she sees a locum it takes the ten minutes to update them on the medication she is on. She is very unhappy, especially considering she may wait weeks to see even see the GP and then does not get to talk about any ailments apart from the chronic condition she suffers from.

2.2 Patients calling the Patients Association Helpline frequently tell us that they want more time with their GP and that this is a particular problem for sufferers of long-term conditions.

2.3 While GP consultations are relatively short, they have been increasing in duration in recent years. Between 1992 and 2007, the average time patients had with their GP rose from 8.4 minutes to 11.7 minutes.1 However, many patients report that they would like to have more time with their GP and that this would help them become more involved with their care. Evidence suggests that patient empowerment and outcomes for patients are affected by consultation time with longer consultation times resulting in better outcomes for patients.2 Indeed, patients are more likely to adhere to chosen treatments and have confidence in clinical decisions if they are able to spend more time with their healthcare professional.3 With the proposed move to GP Commissioning, there are concerns amongst doctors, patients and patient groups alike, that GPs may find they have to spend more time managing finances and have less time to care for patients. This may have a real detrimental effect to patients’ physical and mental wellbeing as well as poorer health outcomes.

2.4 In addition to the beneficial impact that the length of time a consultation continues for can have on patient confidence and outcomes, it also important how that time is spent.4 GPs must use the time to ensure they have the opportunity to give the patient all the information they need to make effective decisions about their care and that the patient also has the time to discuss any questions they may have. By making greater efforts to address the concerns of patients by going through information with them to make sure they understand it and are not confused by it, evidence suggests that patients would be more likely to adhere to medical advice.

2.5 The Patients Association fully supports plans to allow patients to choose their GP practice, but remains concerned that the Department’s resolve and commitment to implementing this policy has begun to wane. Allowing patients the freedom to choose their GP regardless of location offers real benefits to some patients who may wish to register with a practice closer to their work, near their child’s school or with a practice that falls within a CCG that offers services that would best suit their needs. We also recognise the importance of proposed changes to allow patients who move a short distance outside of a practice area to remain with the same doctor to allow a continuity of the doctor patient relationship. Indeed, 66.7% of patients rated choosing their GP practice as being one of the most important choices they could make about their care. The current structure is arcane and does not reflect modern needs. Instead it continues to ignore the fact that it is increasingly commonplace for patients to live or work outside the area of their preferred GP practice.5

3. Supporting Patient Decisions

3.1 Healthcare professionals must be supported to have full and frank discussions about a patient’s care and be in a position to make clear the clinical reasons for their recommendation, including the potential effectiveness and drawbacks of a recommended treatment—or any other treatment discussed or licensed for use by NICE. If the healthcare professional does not know enough about a specific treatment, patients should be signposted to a third sector organisation which specialises in that particular condition for further advice and information. We have also already commented on our belief that there needs to be a “cooling off” period before patients are required to make certain decisions.

Case Study:

One patient told us that they had been receiving the same drug from her GP for the past eight years and has not been put on a different drug. She felt that this was because of money saving and would like to discuss it with her doctor who was not being communicative.

3.2 Giving patients a greater say in their care and giving them more opportunities to choose for themselves what they want is certainly commendable and to be welcomed. However, for many, choice is illusory at best due to personal circumstances. If patients are particularly frail or from a less well of background, it is unreasonable to suggest that they will be willing/able to travel for tests or treatment—particularly for those living in rural areas.

3.3 Even for those who are able to travel, travelling significant distance for diagnostic tests is unlikely to appeal to many patients. Patients want to be able to access good services locally. For most the choice is actually between two local hospitals rather than a local hospital and a centre of excellence miles away.

3.4 Being involved in decisions about their care is becoming increasingly more important to patients. In 2003, a Department of Health survey found that being involved in decisions was a high priority for patients.6 The Patients Association also published a report in 2011 which found that 84.6% of patients wanted to be more involved with decisions about their care.7 Another survey by the Department of Health in 2007 further supported these findings.8 This is important not only from a patient experience point of view, but also with a view towards clinical outcomes. There is evidence that patients who are more involved in decisions about their care are more likely to adhere to medical advice,9 and can result in better clinical outcomes.10

3.5 In a recent straw poll of our members, the majority of patients did feel at least reasonably involved in decisions about their care (54.7%), however, 18.6% said they only felt a little involved and 8.6% said they were not involved at all. While many said they were reasonably involved in decisions about their care, the vast majority wanted to be more involved with 91.3% of respondents stating that.

3.6 It is also noteworthy that when asked whether they more value being able to choose who will treat them or being involved in putting together their treatment plan, the majority of patients (69.8%) said they more valued being involved in decisions about their treatment plan. The Patients Association welcomes plans to give patients with long-term conditions greater opportunities to control their own care. Patient care is about two sets of expertise: the medical expertise of the doctor to propose treatments, diagnose and identify problems, and the patient’s own expertise in how they feel, what they need to make them feel better and the support they need to remain healthy. Combining these two viewpoints to come to a solution which is not only clinically appropriate, but also right for the patient are the core principles of shared decision making. It is also not unheard of for patients with long-term conditions to have more significant knowledge about their condition than their doctor. It is also not uncommon for specialised third sector groups to be able to better support and offer advice for sufferers, although professionals remain apprehensive to refer or advise patients to seek help from these groups. Giving patients the chance to be equal partners in the design, and implementation of their own care will, we believe, be beneficial for many patients.

4. Pain

4.1 We receive numerous calls to our Helpline regarding the issue of pain and we are amazed that at the beginning of the twenty first century we are still not meeting the pain management needs of many people in the UK.

4.2 The medical and alternative therapies to relieving chronic pain are widely known and constantly developing. There is no reason for anyone to live needlessly with exhausting and debilitating pain. Chronic pain is one of the most common reasons people seek medical help and depending on the severity of their pain, sufferers are thought to use health services up to five times more often than the rest of the population. Chronic Pain is a particularly serious problem in later life and can cause tremendous suffering for patients. The effects of chronic pain can leave its sufferers depressed, withdrawn from social activities and isolated. These effects significantly impact quality of life and nowhere are they more apparent than amongst older people.

9 May 2013

1 NHS Information Centre, UK General Practitioner Workload Survey, (2007)

2 Howie J G R, Heaney D J, Maxwell M, Walker J J, Freeman G K, Rai H. Quality at general practice consultations: cross-sectional survey. BMJ 319: pp.738-743, 1999

3 Edwards, A, Elwyn, G, Hood, K, Atwell, C, Robling, M, Houston, H, Kinnersley, P, Russell, I, Patient based outcome results from a cluster randomised trial of shared decision making skill development and use of risk communication aids in general practice, Family Practice, 21(4), pp.347-354, 2003

4 Ogden, J; Bavalia, K; Bull, M; Frankum, S; Goldie, C; Gosslau, M; Jones, A; Kumar, S; Vasant, K, “I want more time with my doctor”: a quantitative study of time and the consultation, Family Practice, Volume 21, Number 5, pp. 479–483(5), October 2004

5 Subsection 14B(6) and section 14D

6 Department of Health, Choice, Responsiveness and Equity National Consultation, 2003

7 Ibid 2

8 Department of Health, What Matters to our Patients, Public and Staff, 2007

9 Marinker M, Working Party From Compliance to Concordance: Achieving shared goals in medicine taking. London: Royal Pharmaceutical Society of Great Britain, 1997

10 Stewart MA (1995). “Effective physician-patient communication and health outcomes”. Canadian Medical Association Journal, vol 152, no 9, pp 1423–33.

Prepared 3rd July 2014