The Department of Health has been consulting further on detailed proposals to implement the Government’s commitment to giving patients more say and choice over their care and treatment.
The Departments has heard that patients want greater clarity over when and how they can share in decisions about their care, about the choices they have and when they apply.
The consultation proposes a model of shared decision-making all along the patient pathway, which should be relevant irrespective of patients’ conditions, their clinical pathway or progress along it. The model indicates where patients would be expected to have more say in decisions about their care in primary care; before a diagnosis; at referral to secondary care; and after a diagnosis had been made. It asks a small number of focussed questions to seek views on:
- whether they have identified the right areas as well as the right levers for making sure our proposals will give patients more opportunities to make shared decisions about their care and treatment, all along the pathway
- whether the proposals are realistic and achievable
- whether they have missed any key issues
- whether they have identified the right means of delivering their proposals.
Comments on Department of Health
Liberating the NHS: No decision about me, without me - Further consultation on proposals to secure shared decision-making
The Royal College of Physicians of Edinburgh (the College) is pleased to respond to the Department of Health’s consultation on Liberating the NHS: No decision about me, without me – Further consultation on proposals to secure shared decision-making.
The College has the following general comments on the consultation:
The College feels that the promotion of choice in collaboration with patients is positive: it is beneficial, for example, for a patient to be able to access diagnostic services locally and at a time that suits them as an individual. However, it is important to strike a balance between quality of care and choice. There is a risk of fractured care if a variety of providers are chosen along a care pathway. Additionally, in order for these proposals to be realistic, NHS IT systems will need to be significantly overhauled and invested in, as at present if a radiological test was undertaken by, for example, a private provider, primary and secondary care colleagues would not be able to access these results using the current system.
Decision making for any patient depends upon a number of factors, and care needs to be taken to ensure elderly and vulnerable patients and those patients not able to use the internet were not disadvantaged compared with younger, more affluent and educated patients.
The consultation paper talks about quality rather than price being the key feature and that commissioners will decide which locally required services are priorities for extending choice to “any qualified provider”. What is not specified is how a qualified provider will be defined and we would ask for more detail on this subject.
The College has the following comments on specific consultation questions:
Q1. Will the proposals provide patients with more opportunities to make shared decisions about their care and treatment in the following areas?
No comment.
Yes. However, choosing non-linked diagnostics runs the risk that information will not be available and hence lead to delay or repeat tests (and additional cost). For example, where a consultation takes place in hospital A but diagnostic test 1 in hospital B and diagnostic test 2 in hospital C. Hospital A may not share notes with the others and so there may be a delay in getting results, and even if a report is available it is often useful for the consultant to review the result eg see the X-ray images. If the hospitals are not linked this would not happen, and a risk of missed or delayed diagnosis could ensue.
Additionally, the decision as to which secondary care specialist the patient sees will be determined by what the problem the GP thinks the patient has and what secondary care providers are available. For example, if the patient has asthma, there will be a number of secondary care units possible for the patient to choose from. In contrast, if the patient has a rare medical problem the choice becomes extremely limited.
Yes, however, choosing a consultant led team rather than a specialty means one consultant could become overloaded. Capacity planning amongst the teams would be needed and this could be challenging.
Outpatient referral of for example, elderly patients away from their local hospital causes problems if you need to engage physiotherapy or intermediate care, or significant waiting-list investigation (such as scanning), because the doctor referred to will not know about local services for the patient. This problem is already seen with Choose and Book.
Yes. However, the transfer of information would need to be very robust to avoid delays in obtaining and reading results and acting on them appropriately. There is increased clinical risk when patients transfer if clinicians cannot access full diagnostic test results and rely on written summaries, particularly for “grey cases”.
- in primary care?
- before a diagnosis?
- at referral?
- after a diagnosis?
Q2. Are the proposals set out in this document realistic and achievable?
The proposals are challenging and caution must be taken to ensure uncoordinated care pathways are not inadvertently introduced: IT systems and interrelationships with different providers must be strong and resilient for these proposals to be successful.
While useful experience has been obtained from the use of the Choose and Book scheme, lessons need to be learned from this and the timeframe laid out in the consultation proposals is therefore very ambitious. Until pilot studies are reported it is difficult to say whether these will be achievable.
Choose and Book for diagnostic services means that the hospital clinician has to rely on an outside provider. Ultrasound, for example, is operator dependent. Good ultrasound departments regularly audit their results. In some hospitals, weekly meetings take place with stroke physicians, consultant radiologists and ultrasonagraphers, in order to regularly review images (ultrasound and MRI) of stroke and Transient Ischaemic Attack (TIA) patients. This gives the opportunity to provide feedback, education and quality control to the service. Should a patient have a scan done by an outside provider, quality control provisions will need to be known. If a hospital clinician makes a decision based upon inaccurate information this may have potentially negative consequences for the patient.
Clinicians also need greater access to information on local disease patterns and response to treatment. The loss of the Strategic Health Authorities will remove important epidemiological and public health functions. The whole area of discussion of risk and decision making is in its infancy and these proposals may impact on the clinical governance aspects of making informed choices.
After a diagnosis has been made a decision needs to be made about treatment. The range of treatment options may be considerable; from non-invasive to major surgery. The discussion of the possible options occurs in a clinical setting and is determined by what is clinically appropriate. Decision aids for complex medical problems are being developed, but it is often the skill of the clinician in relaying complex information that supports the patient to make an informed decision.
Q3. Looking at the proposals collectively, are there any specific areas that we have not recognised appropriately in the consultation document?
Good working relationships between primary and secondary care providers will be essential for the proposals to be successful, and more emphasis should be placed on this in the consultation.
There may be significant effects on education and training where hospital services which provide current training to junior doctors are provided through a fragmented system of provider, and is an issue that should therefore be kept under close consideration.
Q4. Have we identified the right means of making sure that patients will have an opportunity to make shared decisions, to be more involved in decisions about their care across the majority of NHS funded services?
The paper accepts that many proposals are still evolutionary: the College would like to see clearer and more detailed proposals from the Department of Health in order to form a considered opinion.
As discussed earlier in this response, making a shared decision depends upon understanding of health care problems. Education of the patient is dependent upon a patient’s background and their access to IT systems. A significant number of elderly patients may therefore not benefit from the proposals; paradoxically they are often the heaviest users of health care resources. Decision making tools for the patient need to be developed to help this process and this has not been adequately discussed in the consultation paper.
Q5. Do you feel that these proposals go far enough and fast enough in extending choice and making “no decision about me, without me” a reality?
These proposals are very ambitious and should be developed with robust pilot schemes. Engaging with patients in a new way will require time and resource, for instance with specialist nurse support.
One of the keys to making this laudable aspiration a reality is clinical time to support patients to understand the option and participate in decision making. Without investment in more clinical time, fewer patients will be seen in each clinic as each consultation will take longer. However, there is no acknowledgement of this in the proposals. Extensive resources will need to be devoted to these proposals to make them a reality. In health care, resources are limited, and data clearly shows that doctors per head of the population are significantly less in the UK compared to European or North American countries. This will need to be addressed if these proposals are to be successful.
Additionally, substantial resources will need to be devoted to ensuring there is enough accurate information available to each individual patient about their condition and the treatment options available in order for them to make informed choices. The implications of this should not be underestimated.