Cancer Patient Experience

Mark Durkan Excerpts

Wednesday 30th October 2013 Westminster Hall

[Jim Shannon]

I thank my hon. Friend for that comment. In my constituency, we have a young carers organisation that also works with adults. I have met some young carers and am aware of young sons and daughters who look after mothers, fathers and other siblings. We could not do without them. We are ever mindful of their experiences. I know young carers, my hon. Friend knows them and I suspect that everyone in the House knows individual young carers.

Some people may ask how the cancer experience can ever be positive, but although going through cancer will always be horrific, the care that is given can and does impact upon how a patient feels. The Macmillan report states:

“Good patient experience is closely connected to improving other outcomes such as recovery from an illness. However, the sad reality is that many people still have a poor experience of care.”

We can hopefully try to address that problem today. Cancer is no respecter of persons, but that does not mean that cancer treatment precludes the sufferer receiving the utmost respect and dignity through treatments that may be undignified in their essence. We have all lost a little dignity while in the doctor’s surgery and the manner of the doctor or nurse often determines how embarrassed we become. If we are treated gently and with care rather than being pushed through the process as quickly as possible to get the next patient seen, we may feel better as a result. That does not always happen and I can certainly appreciate the pressure that doctors and nurses are under to do the procedures, tick the red-tape boxes and bring down waiting lists. However, the fact that we are not dealing with lists but with people must never be far from our minds.

Again, I stress that I am not placing the blame on the providers of care, but something must be done to address the fact that, on average, only 56% of cancer patients in England said that doctors and nurses asked them by what name they wanted to be called, which was an issue highlighted by the hon. Member for Hertsmere. A little bit of consideration and allowing the patient to maintain their dignity does not take a whole lot of effort. It may seem trivial, but this is a serious point: a girl called Betty works in my office and were I to call her “Beatrice”, she would get upset and would tell me. Similarly, should I refer to the other lady in my office as Mrs Cotter when she is actually Mrs Armstrong-Cotter, she would immediately put me in my place. I use those examples because it is important that a caring bond is formed with cancer patients. A wee bit of time, consideration, humility and dignity can really make a difference. The same can be said on a greater scale when people are doing intimate things to patients while always reminding them that patients do not know them. That is a small thing that the Macmillan report highlighted that could make a patient feel that much more comfortable and indeed that much more safe.

The carers at the Macmillan reception also described some things that they thought should be happening in hospitals. They outlined the need for someone to be available to hospitals across all regions. The six people we met yesterday were all from different parts of the United Kingdom and all had different stories to tell. It seems that some trusts are responding well, but others are not. We need a universal response that encompasses all areas. The Macmillan representatives also suggested that someone should also be available to provide advice on benefits and on care and just to give support.

Another point that came out of yesterday’s discussion was about respite care. Some of the ladies we met were single carers—in other words, a wife looking after a husband, with no sons, daughters or other family members close at hand. We also need to consider the issue of respite care and how we can help such carers get a wee bit of time for themselves.

[Mark Durkan (Foyle) (SDLP)]

The hon. Gentleman said that Macmillan Cancer Support has suggested that help with understanding social security and welfare advice is important. Is he aware that, in the Altnagelvin area hospital in my constituency, Macmillan and the Western Health and Social Care Trust run the independent Macmillan/North West advice service to do exactly that? It basically navigates people through the benefits system and all the other support mechanisms. It does not expect people to be experts on such arrangements in the public administration system, but takes away an awful lot of the worry and provides pathways to care and support that they would not otherwise know was available.

[Jim Shannon]

The hon. Gentleman is absolutely right. I have such a service in my area. I am pleased that Macmillan and others provide such a level of care and support at times of great concern and worry in the Ulster hospital in Dundonald. I must say a great thank you to the volunteers—a great many of them are volunteers —who provide that service.

It is nice to see the shadow Minister, the hon. Member for Leicester West (Liz Kendall), in her place, because she and I had a discussion the other day about the report on care that is coming to the House for consideration. I hope that some of the points made by the ladies to whom we spoke will be part of our next debate on the draft Care and Support Bill, and I am sure that no one will be found wanting in responding to that.

In my opinion, the ethos of a hospital is reflected in how patients are treated. The Macmillan survey, which highlighted the priority of patient experience, has painted a picture of how each different hospital board views the importance of the patient care experience. It found that boards raised patient experience as an agenda item in policy meetings, but that only 5% of such items led to further action: boards noted the patient experience, but did not deem it important enough to follow up.

When I wore my other hat as a councillor, for some years I chaired the council’s audit and risk management committee and read the absolutely endless reports on matters prioritised as categories 1, 2 or 3: something in category 1 needed immediate attention, something in category 2 needed attention in a reasonable time, and something in category 3 needed attention just at some stage. It is safe to say that many of the category 3 priority cases remained the same and did not change from year to year, because time never permitted for making those changes, as something more urgent was always pressing. In other words, there were always category 1 and 2 priorities and, unfortunately, category 3 priorities sometimes sat on the shelf. My belief is that patient experience should not be a category 3 priority, but should be considered as a category 1 priority; it should not have to wait until everything else is fixed before it receives attention.

To conclude as I began, cancer is a wretched illness, whose deadly or grimy fingers reach out to impact on wide family circles, as well as entire communities. The experience of going through cancer has an impact on not only the individual, but the people around them. I believe that it is time to make cancer a priority, with a UK strategy for the Government here and those in the regions of Scotland, Northern Ireland and Wales. That is why I wholeheartedly support the hon. Member for Hertsmere and, in doing so, I again ask that any decision taken by the Secretary of State will look at having a UK strategy as well as additional funding. I thank the hon. Gentleman for bringing forward this debate.

--- 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.

[Albert Owen (in the Chair)]

In calling Eric Ollerenshaw to speak, I remind Members that I will be calling the Front-Bench spokespersons at 10.40 am at the latest.