Sue Ryder’s response to the government’s consultation, Shared decision making: no decision about me, without me.

Organisation: / Sue Ryder
Author: / Charlotte Good, Policy and Campaigns Officer
Email: /
Address: / First floor, 16 Upper Woburn Place, London, WC1H 0AF
Telephone number: / 020 7554 5939
Date: / Aug 2012

About Sue Ryder

Sue Ryder is a charitable provider of health and social care services across the UK. We care for people with long term or complex conditions and disabilities providing specialist palliative and neurological care. We operate in a range of environments with community and home-based care delivery alongside our 7 hospices and 7 neurological care centres.

We are funded through charitable donations, contracts with PCTs and local authorities and revenue from our network of more than 350 shops across the UK.

Designing and delivering person centred care and support is at the heart of Sue Ryder’s service delivery. We believe that to improve the outcomes of the people we care for we must consult their needs and wishes and deliver care according to their preferences. Our experience of involving the people we care for in decisions about their care makes us well placed to offer our expertise and comment on building a national offer.

Overview

We support the principle of shared decision making and no decision about me, without me that empowers patients to have more choice and control in making decisions around their care and treatment to help them achieve better health and care outcomes. We are disappointed however that this consultation paper does not offer detail on the structural change and implementation process needed to put the policy into practice.

This paper focuses particularly on access to choice of provider, rather than embedding a culture change to empower and enable individuals to make decisions about their care. We reiterate the concerns of sector partners including National Voices that the paper does not adequately demonstrate a clear offer for the implementation and adoption of shared decisions about care and treatment.[1]

The principle of shared decision making already exists and is already in the hearts and minds of professionals. The paper should set out how it seeks to embed this more formally and embed a clinical culture change, as well as making the principle and practice more patient led.

We have answered the consultation questions below detailingour concerns and have made recommendations accordingly.

Specific consultation questions

  1. Will the proposals provide patients with more opportunities to make shared decisions about their care and treatment in the following areas?
  2. Primary care?
  3. Before a diagnosis?
  4. At referral?
  5. After a diagnosis?

We agree that the model of shared decision making should represent decision making opportunities all along the care pathway. The proposed model is a starting pointbut needs development. Key decision points have been missed and opportunities around choices and facilitating choice at the end of life should feature more prominently in the model.

Primary care

We are pleased that this section of the model recognises the importance of personalised care planning. This needs to be supported by a staff culture that puts patients first which requires training and education. The paper does not set out how clinical teams will be supported with training, extra time for consultations in addition to ensuring flexibility of plans.

We have recently worked with Groundswell and Helen Sanderson Associates in the development of individual person centred support and wellbeing plans in our neurological care centres.These plans are developed after thorough consultation with the individual we care for, their family, clinicians, and anyone else involved in their care. The plans identify the individual residents’ aspirations for the future of their care. Staff are being trained so they can develop plans and have ongoing conversations to find out what is important to those they care for,how they want to live, what they want to keep doing and what needs to change,what support they may need, and how to make these changes. We are going through a whole system culture change to be able to develop and deliver these plans. We believe this consultation lacks the foresight and commitment needed to develop a national system culture change with a meaningful offer to involve people in their care.

It is important that as well as having a choice of service and provider, within this people are able to express their voice in how their care is delivered.

Before a diagnosis

This section is focused entirely on choice of provider and not enabling individual decision making. This section fails to recognise decision points at pre-diagnosis testing, for example for rare genetic diseases, such as Huntington’s disease, where decisions affect the whole family, and potentially family relationships. The impact of deciding whether or not to be tested for a diagnosis affects the whole family, their care plans and management of care for the future. These decisions need to be supported by conversations with clinicians and counsellors where appropriate.

Decisions after a diagnosis

This section tends to focus too heavily on treatment options immediately following diagnosis. It does not sufficiently recognise decision points in the ongoing management of someone’s care after diagnosis. We recommend this section makes provision for opportunities beyond diagnosis. For example, often people living with an acquired brain injury may have ongoing complications, particularly around motability. The paper needs to make more consideration of people who may be living with their condition for a number of years and have lost contact with the NHS, but still need to have the opportunity to be involved in making decisions about the management of their ongoing care.

Being involved in decisions about end of life care is vital in making sure people are supported in the best way that suits their needs and to be cared for and die in the place of their choice. Although the paper recognises this we believe the shared decision making model needs to be expanded to include choices at the end of life as a distinct part of the patient pathway model. Not only should people be involved in the decision making process there should be flexibility from providers in how they respond to and facilitate decisions.

  1. Are the proposals set out in this document realistic and achievable?

We don’t believe that the proposals are realistic because the paper doesn’t offer a commitment to building an infrastructuretosupport a culture and behavioural change, for both clinicians and patients, upon which to build the model.

In order to enact the proposals in a meaningful way there will be associated costs in delivering a culture change amongst professionals, for example in training and education, documentation, decision aid tools and developing person centred patient records. Clinicians will need to be provided with training on communications skills and support to embed a professional culture change to ensure they are receptive to supporting patient decision making.

  1. Looking at the proposals collectively, are there any specific areas that we have not recognised appropriately in the consultation document?

The opportunities are very much focused on choice of provider. Choice of provider is important, and commissioners should help to stimulate a varied marketplace where people can have more choice and control. However choice of provider alone is not enough. As mentioned above this paper lacks sufficient focus on enabling and supporting patients to make decisions.

We are concerned that there will be a lack of capacity and resource to implement many of the proposals, and lack of clarity and expectation of the roles of different services. For example the consultation does not reflect how decision making opportunities will be linked to non NHS funded services, for example private providers and other social care providers including day services and community support.

Last year a paper from the King’s Fund argued that shared decision making may involve rethinking the clinical pathway design to incorporate time for information provision and coaching.[2] This consultation does not address the changes that will be needed to clinical management to implement the model and whether or not it will be possible with tight resources and lack of existing capacity.

  1. 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?

We welcome the importance that the paper places on having access to appropriate, timely and understandable information to allow patients to make informed decisions. However, as the King’s Fund in a previous paper has pointed out, information alone is not enough. It needs to be supplemented by decision support, personalised care planning and self management education from well trained professionals. [3]

Anecdotally we have been told by people who use our services that they like to access information in different formats and through different channels including face to face advice. Patients benefit from being given the time to listen to and take part in conversations where they can better understand information to make informed decisions. This process encourages more people to become active partners in their care.

Although information is at the core of the model, another layer needs to represent decision support and how patient voice is enabled and facilitated. This could feature more prominently the use of decision making aids and the use of health supporters to equip patients with a better knowledge and understanding of options available to them. We support the current development of the national decision making aid but have questions over its sustainability due to associated costs of development and roll out.

We are aware that the patient decision aids are only going to be in English. This does not support those in communities where English is not the first language and immediately discriminates them from the decision making process. Likewise we are concerned that the proposed model will benefit those who are already active in articulating their needs and preferences. More attention needs to be made to enabling the harder to reach sectors of society to engage with the process.

We would encourage that the decision making aid tool should not only be available online. It also needs to be flexible and responsive enough to take into account people’s changing needs who may have fluctuating conditions and capacity.

  1. 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?

Developing a shared decision making model is not just about identifying the key decision points on a patient’s care pathway but ensuring everyone has equal access to the opportunity to be involved in decisions around their care and treatment as much or as little as they want.

The proposals don’t go far enough in developing an offer that makes the right to choice and no decision about me, without me an accessible policy open to everyone. The paper makes assumptions that everyone already has the same opportunity to make decisions about their care and treatment.

We are concerned that more marginalised sectors of society including those with complex needs who find it difficult to express their voice and be heard will not benefit, but it is these groups that should benefit most. There needs to be a public education programme to publicize what it means to be involved in decisions about care and treatment.

In addition tools need to be developed to help marginalised groups access support to help them in the decision making process. This might be through health supporters, who we are aware will exist, but in what capacity and how much resource will there be to ensure this is sustainable in uncertain.

[1] National Voices

[2] King’s Fund p. 35.

[3] Kings Fund p. 36