Health and Social Care Bill

Memorandum submitted by Macmillan Cancer Support (HSR 47)

1. Executive summary

1.1. Macmillan Cancer Support welcomes a number of the proposed amendments to the Health and Social Care Bill particularly in relation to the strengthening of duties around patient and public involvement and the increased directives around integration of services.

1.2. The NHS Commissioning Board should be an exemplar for patient engagement. It should include representatives who have a thorough and broad understanding of patient experience alongside those with a more personal experience. It should also ensure that patients and the public are involved in shaping the services commissioned directly by the Commissioning Board.

1.3. Cancer networks have a key role to play in ensuring that services are integrated for people affected by cancer. Their specialist knowledge will be essential for clinical commissioning groups (CCGs) to commission complex cancer pathways. The NHS Commissioning Board will need to ensure that CCGs collaborate with networks.

1.4. All providers of services should have to comply with the highest clinical standards such as those set out in Improving Outcomes Guidance.

2. Introduction

2.1 Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support and push for better cancer care. In addition to this written evidence, Ciarán Devane, Macmillan’s Chief Executive gave oral evidence to the Public Bill Committee on 28 June 2011 and we also provided earlier written evidence to this Committee before the Bill was recommitted.

2.2 In the initial stages of the Health Bill, Macmillan called on the Government to secure the future of cancer networks. We are very pleased that the Health Secretary, Rt Hon Andrew Lansley MP, has listened to the concerns of the cancer community and announced that cancer networks will be funded until 2013 and that the NHS Commissioning Board would continue to support them thereafter. The key challenge now is to ensure that networks are fully integrated into the reformed NHS.

2.3 Macmillan is also part of the Richmond Group, a coalition of ten charities, which has been calling for additional changes to the Bill to strengthen patient and public involvement.

3. The NHS Commissioning Board should be an exemplar for patient engagement

3.1. The NHS Commissioning Board has a great opportunity to model best practice when it comes to patient engagement. It should not just demonstrate how to do this but also the value it adds in decision making and shaping policy. Strong leadership in this area by the Board is also more likely to ensure that CCGs develop an effective system of patient and public involvement.

3.2. As the Board will be responsible for commissioning a number of services, including primary care and specialised services, it is vital that it involves patients and the public in this process and that there is appropriate investment in an ‘involvement infrastructure’, e.g. training and support for patient representatives. It is important to note that what patients and the public value from a service may differ in a number of regards from what clinicians and commissioners view as important or what the latter thinks patients view as important. To ensure that services are responsive, it is essential that the patient voice is embedded throughout the commissioning process, in assessing needs, service design and redesign, contracting, monitoring and evaluation.

3.3. The Board also needs to be able to benefit from the knowledge of individuals who have a thorough and broad understanding of patient experience. As such, in terms of membership, we would argue the Board should look to appoint at least two individuals (mirroring the number of lay members on clinical commissioning groups). These could be people who have their own experience of being a patient or carer, or persons who have a broader understanding of issues that are important to patients.

3.4. Clause 5 of the Bill introduces schedule 1 which gives the Secretary of State the powers to introduce regulations regarding the appointment of members of the Commissioning Board. We recommend that those regulations require that the Board includes members with a thorough and broad understanding of the patient perspective.

4. Cancer networks should be embedded in the reformed NHS to ensure the cancer services are integrated

4.1. Integrated care is mentioned throughout the Bill, perhaps most notably in relation to the changing role of Monitor, which has a specific role to encourage integration where it is seen as valuable. Integrated care means the right services, in the right place at the right time for the right person. Care should be seamless so people do not notice the joins.

4.2. In order to achieve this providers and commissioners need to collaborate to design care pathways, with effective transitions between different services and care settings.

4.3. Sharing of patient information will also be crucial as well as strategic planning to reconfigure services so that specialist procedures are delivered at an appropriate level. Well coordinated care can also save the NHS money, for example by reducing emergency admissions.

4.4. Good cancer networks play a variety of roles that can support integration of cancer care and aid clinical commissioning groups in commissioning high quality cancer care. These include:

i. Provision of specialist commissioning expertise and advice on cancer services

ii. Coordination of cancer services across primary, secondary and tertiary care

iii. Support in developing patient involvement mechanisms

iv. Ensuring equity of access to services across a geographical area

v. Expert advice about the local health context in which services are being delivered

4.5. The complex care pathway needs to be managed well to ensure that people do not fall through the gaps. The role that cancer networks play in co-ordinating services through encouraging collaboration of providers can be crucial in ensuring that these transitions go smoothly.

4.6. Another circumstance where collaboration is crucial is where decisions need to be made about the reconfiguration of services, for example when the decision to centralise services means closing specialist units in other hospitals. This can be the case for rarer cancers such as Soft Tissue Sarcoma where Improving Outcomes Guidance recommends that a multi-disciplinary team should see no fewer than 100 patients a year. [1] In situations such as these, cancer networks can play a key role acting as an ‘honest broker’ between different parties. However, this will only work if commissioners and providers engage with clinical networks.

4.7. The amendment to clause 22 (140C) puts a new duty on CCGs to promote integration. Engaging with clinical networks will be essential in delivering on this. To ensure this happens we recommend that Clinical Commissioning Groups should have a responsibility to engage with networks as part of their formal accountability relationship with the Commissioning Board.

5. Quality should be retained in cancer services

5.1. We hope the Bill will promote the drive to higher quality standards within the NHS. In the case of cancer services, standards are currently set largely through Improving Outcomes Guidance (IOGs). Alongside these, a number of new Quality Standards (QSs) are also being developed.

5.2. IOG guidance sets out a range of important standards such as the value of Cancer Nurse Specialists and effective multi-disciplinary teams (MDTs) in providing high quality, patient centred services. The NICE clinical guidance on supportive and palliative care guidance also takes a holistic view of patient care including the need for access to information and supportive services.

5.2. IOGs are currently enforced through peer review which cancer networks play a key role in supporting. It is important that this adherence to quality is not lost. We believe that every provider should comply with the highest clinical standards and the NHS Commissioning Board needs to take steps to ensure this happens. One way to do this is through ensuring that commissioning guidance set outs what high quality services look like reflecting the specifications that are set out in IOGs and QSs.

5.3. The Board has a duty to ensure quality as set out in Clause 19 (13D). We recommend that this quality needs to be defined within the Bill as being compliant with the highest standards of quality as evidenced in IOGs and QSs. To ensure this happens the Board needs a mechanism to monitor and encourage compliance.

July 2011

[1] A soft tissue sarcoma MDT should meet minimum criteria and manage the care of at least 100 new patients with soft tissue sarcoma per year. If a sarcoma MDT manages the care of patients with both bone and soft tissue sarcoma, it needs to manage the care of at least 50 new patients with bone sarcoma per year and at least 100 new patients with soft tissue sarcoma per year.

Prepared 19th July 2011