Cancer Patient Experience

Robin Walker Excerpts

Wednesday 30th October 2013 Westminster Hall

[Mr Clappison]

The hon. Gentleman makes an excellent point, and some of the matters I will turn to in due course underline its strength. May I apologise to hon. Members? I mentioned NHS England, because that is what the survey covers, but I will turn to the situation in Northern Ireland, Wales and Scotland in due course. I am delighted that so many Members from Northern Ireland are here this morning.

The next issue is financial support. Cancer patients and their families obviously need financial support, just as everybody else does. Although significant progress has been made since the first cancer patient survey in 2010, almost half of patients who would have liked information about how to get financial help or benefits still do not receive it.

[Mr Robin Walker (Worcester) (Con)]

I congratulate my hon. Friend on securing this hugely important debate. He mentioned the importance of financial advice and support, but does he agree that service design is also important? I came across a case of one constituent, David Wilson, who, while undergoing chemotherapy, received 270 different pieces of paper from our city council in just one month—August this year. It is vital that we design services so that Her Majesty’s Revenue and Customs, local councils and the Department for Work and Pensions work together to make life for patients easier and simpler and to ensure that they understand the financial entitlements.

[Mr Clappison]

My hon. Friend makes an excellent point that I am sure the Minister will want to address. The last thing that somebody coping with the treatments and everything else wants is to be bombarded with different pieces of information and requests from central or local government bodies, which could do something much more coherent and easy to understand if they streamlined their services.

I would like to address relational care, which the hon. Member for Upper Bann (David Simpson) raised in his intervention. It covers matters such as communication, trust in nurses and being treated with respect, all of which are important for cancer patients. There is still room for improvement, according to the findings of the most recent survey. For example, 42% of respondents said that not all doctors and nurses asked what name patients preferred to be called by, which can be important to older people. It is a question of finding the right amount of kindness. Our clinicians—nurses and doctors—are marvellous, but that did emerge from the patient survey. Kindness can make a great difference to people in that situation.

Macmillan Cancer Support’s report showed that patient experience across the NHS is still not regarded as having equal importance as clinical effectiveness and patient safety. The Government’s decision to make patient experience one of the five domains against which the health service will be held to account should be warmly welcomed. It is clear, however, that a lot of effort needs to be put into the institutional framework to reinforce that priority.

The NHS mandate and outcomes framework needs a stronger focus on improving relational care. Hospital boards need to take a lead on prioritising patient care; a recent survey showed that its importance to different hospital boards varies considerably, which is clearly wrong, because all hospital boards should take it seriously. Commissioners of cancer services have a vital role to play, as does the chief inspector of hospitals. All such bodies need to reinforce the need for relational care and kindness in dealing with cancer patients.

--- Later in debate ---

[Mark Durkan (Foyle) (SDLP)]

It is a pleasure, Mr Owen, to meet under your chairmanship this morning. I congratulate the hon. Member for Hertsmere (Mr Clappison) on introducing this important debate. I want to raise a few points on the cancer experience that arise from my constituency.

As other Members have said, it is important that, in providing and modelling our services, we should directly draw on the experience, both in qualitative and quantitative terms, of patients and focus on outcomes. We also need to harness fully the insights that patients can give us into how services can be improved, better managed, better modelled and, more importantly, better accessed and understood.

In my constituency, there has been a major campaign for a localised radiotherapy unit. It was meant to happen as part of the overall improved cancer strategy in Northern Ireland, but for various reasons it got held up. The campaign was led by the Pink Ladies, a group who have gone through the cancer journey. They have all experienced breast cancer, but they are in no way exclusive about their cancer as opposed to other types of cancer experience.

On Monday morning, I attended a Pink Ladies event, which focused on the new partnerships in which the group was involved. It has spread its involvement to include not just Macmillan Cancer Support and Action Cancer but local community partnerships. It discussed providing new services at a neighbourhood level, including counselling services, listening-ear services and complementary therapy services. All are supported by professionals in the Western Health and Social Care Trust.

The issue is about making the services more accessible, comfortable and compatible with local users, who will rely very much on those who have been through, and are going through, the cancer experience, because such people are best placed to give support to others who are new to the journey.

On the point made by the hon. Member for East Londonderry (Mr Campbell) about male sufferers, an offshoot of the Pink Ladies has been formed comprising males who have been through, or are on, the cancer journey. They, purely in derivative terms, call themselves the Pink Panthers, but they are addressing exactly the issues that the hon. Gentleman mentioned. Part of the role of the groups is to help to provide advice to other patients, and their families and carers, about some of the issues that might arise and to anticipate some of the questions that might be going through patients’ heads—questions that they are just not able to articulate or are not yet ready to vocalise.

[Mr Robin Walker]

I am grateful to the hon. Gentleman for giving way. I apologise for having to leave the debate before the summing up.

I want to pick up on the hon. Gentleman’s point about how cancer patients can contribute to the campaigns. I have had a radiotherapy campaign in my own constituency in which Paul Crawford, a former head and neck cancer patient, has played an important role. Does the hon. Gentleman agree that cancer patients can play an important role by getting on the boards of local health trusts and health bodies and providing knowledge and experience, as indeed my constituent has?

[Mark Durkan]

I fully accept the hon. Gentleman’s point. The point that I was about to make myself exactly “rhymes” with his observation. It is that these people are in a position to offer advice to others diagnosed with cancer; to offer advocacy to politicians, service providers and managers as to how things can be improved; and to offer real insight in administrative terms, by helping to future-manage such services and review them against the sort of yardsticks that other hon. Members have said they must be measured against.

I said that the radiotherapy unit now to be based at Altnagelvin, which will be funded on a cross-border basis in Ireland, is really a roll-out of part of the wider cancer strategy in Northern Ireland. A number of years ago, I served as Minister of Finance in Northern Ireland in the first Executive following the Good Friday agreement, and then as Deputy First Minister. One of the most important things I did was when we negotiated what was called a reinvestment and reform package, with new borrowing powers coming from Westminster but also a funding package that was to complement the infrastructure fund that we as the Executive had developed.

The first item that I was able to insist on with Tony Blair and then with the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown)—the two former Prime Ministers—was that funding should go to the regional cancer centre. It was meant to be a key part of the cancer strategy in Northern Ireland that was being led and advocated by Professor Paddy Johnston. We were able to fund that scheme, which was not coming forward and which did not seem to be breaking through in the Department of Health’s plans or budget submissions to me or to anybody else. We had been on the point of losing Paddy Johnston, who was going to go back to the United States, where he was going to be funded to do all sorts of things and use his skills.

However, as I say, we were able to create that cancer centre without going to a private finance initiative or anything else. Great work is being done there, not only for the patients it serves in Northern Ireland but because of the calibre of people it can attract and the clinical trials it can run, which are all part of improving the picture of cancer services throughout the United Kingdom.

As other hon. Members have said, staff at that centre and others are helping to work miracles every day with people who are suffering from cancer, but they are very conscious and very clear that their task is still to keep narrowing the gap between what the services ought to be and what they actually are, which is why we constantly need to drive on performance and outcomes in these areas.

Regarding the cancer experience, I am also very conscious of a constituent of mine who wrote a book a number of years ago, based on her experience, which basically says, “I have cancer but it doesn’t have me.” She is a lady called Kate Dooher and her book sets out very clearly her experience of a cancer journey and the implications for her family, colleagues and friends. Again, policy makers can get real insight from that about what the issues mean in real and practical terms.

I am a member of a number of the all-party groups on cancer, including all-party groups on different cancers, here in Parliament. Those groups can provide a platform for those with real insights, those who are providing care, those who are leading a lot of the professional fight against cancer and those who are driving the research platform. We should not underestimate the importance of either research or the linkage between good care networks and research. That is why Cancer Research UK is one of the most prominent advocates for more radiotherapy provision, because it believes that such provision not only makes services more accessible but that it is important in qualitative terms and in the research benefits that can come from improving services and treatment models in the future.

Going back to what the hon. Member for Hertsmere said, that is why, when we are talking about the patient experience, we very much have to listen to the patients themselves and base things not on what we think is the “nice fit, reasonable fit, just about cost-effective patient experience” but think in real and wholehearted terms about the patient experience.

Patients know how they have been able to improve their own experience for themselves, and they know how services whose staff might think they work do not really work for them, and how those services can be improved and modified. We need to gain their insight and emancipate their understanding as part of lighting the way forward for ourselves.