Cancer Patient Experience

David Simpson Excerpts

Wednesday 30th October 2013 Westminster Hall

[Mr James Clappison (Hertsmere) (Con)]

Mr Owen, it is a pleasure to have you chairing the debate on a subject that is important to many families up and down the country. Some 2 million people in the UK are living with or beyond cancer, and that figure is set to rise to 4 million by 2030. Although it is a cause for celebration that more people than ever survive after a diagnosis of cancer, a significant challenge must arise in ensuring that their clinical and human needs are met and that patients have the best possible experience.

Before turning to the nature of the challenge and the points I wish to raise, I pay tribute to all those who work in and support the many charities and voluntary organisations that address the challenge posed by cancer. There are many such organisations, but, with utter respect to all those involved in the field, I shall mention just a few: Macmillan Cancer Support, Cancer Research UK, Breakthrough Breast Cancer, Marie Curie Cancer Care, Breast Cancer Care, Beating Bowel Cancer, the Roy Castle Lung Cancer Foundation and the Teenage Cancer Trust. There are many others. They all do fantastic work and much to improve patient experience and give hope to many of our constituents.

The Government have set great store by patient experience and all the issues that naturally interest cancer patients. I warmly welcome my right hon. Friend the Prime Minister’s ambition to give every cancer patient the opportunity to be a research patient if he or she so wishes; that must interest many people in that position.

The UK now leads the world in recruiting cancer patients to take part in research. One in five cancer patients in the UK takes part in some form of research, which compares with 3% of people in a similar position in the United States. I pay tribute to the research of Cancer Research UK in that regard. Last year, 36,000 patients took part in its trials in this country.

I welcome the fact that NHS England has said that it plans to continue the important national cancer patient experience survey. The results of the 2012-13 survey showed that there is room for improvement in some areas of care. I make that point not as a criticism of the NHS, but to highlight areas where there is room for improvement. Macmillan Cancer Support highlighted some such areas in particular, and has urged Ministers to take notice of and act on them. I urge Ministers to listen to the representations being made to them by Macmillan Cancer Support and others.

The national cancer patient experience survey highlighted several important issues, and I will mention three. The first is care planning and information. The most recent cancer patient experience survey reveals that before starting treatment, 45% of patients were not fully informed about the side effects that could affect them in future, that 78% were not offered a written assessment and care plan, and that 41% were not given enough support from health and social services after leaving hospital. As a result, not all patients felt that their families were given all the information needed to help care for them at home. That is clearly an area where there is room for improvement.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining this important debate. He mentioned Macmillan, which says in the research paper on the survey:

“The lack of basic care, dignity and respect experienced by cancer patients in hospital is shocking.”

It also says that 15% of patients experienced humiliation. That should not happen to someone suffering from cancer.

[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.

--- Later in debate ---

[Jim Shannon]

I thank my hon. Friend for that contribution. The males of the species do tend to wait just that wee bit longer. I will not relate my personal case to Westminster Hall, but we do sometimes leave things a little longer than we should, which is perhaps a failing on our part. The Health Minister and his Department in Northern Ireland have run several campaigns to highlight prostate cancer in particular. It may be that MPs know more people, but I have two close friends who were diagnosed with cancer. Thankfully, in both cases, they acknowledged early that something was wrong and went to their doctors and were then referred for health checks. I am happy to say that the treatment that they are now receiving will save their lives, but if the diagnoses had been made a couple of months later, I suspect that it may have been different. My hon. Friend is absolutely right. Entire families and communities are affected by this cancer pandemic. The House must deliver an effective strategy to help those experiencing the scourge of cancer.

I read with great interest the Macmillan report and the hon. Member for Hertsmere outlined the many cancer organisations and societies that do tremendous work. Macmillan’s document, “Improving care for people with cancer: Putting cancer patient experience at the heart of the NHS”, wants patient care at the core of the NHS and I heard yesterday from carers and people involved with Macmillan how important that is. The report references England and Wales only, but the overall message is mirrored throughout the UK, and the other Northern Irish Members and I are here today to provide the experience of Northern Ireland.

I recently met Edwin Poots, the Minister of Health, Social Services and Public Safety in Northern Ireland, regarding the provision of cancer carers in my area, as it is clear that changes that could really make a difference cannot be implemented due to a lack of funding, which is part of the problem, and the lack of a strategy for the increases in demand over the next 10, 20 or 30 years. Looking at the Ulster hospital in particular—I am not going to be critical of the staff, who are tremendous and can never be paid enough for what they do—I can see greater demand and that needs to be taken on board. I ask the Minister to consider holding discussions with those in the regions, in particular with the Northern Ireland Assembly and Edwin Poots, because we need a strategy that takes into account the whole of the United Kingdom and not just the mainland. We can work together. Experiences, interests, qualifications and knowledge may differ across the UK, but it is time that we exchanged some of that in order to help each other.

Getting back to the Macmillan report, it states what I am sure that everyone here believes:

“Every person diagnosed with cancer should have a positive care experience and be treated with dignity and respect throughout their cancer journey.”

My hon. Friend the Member for Upper Bann said in his intervention that people needed to be treated as human beings and not just as numbers.

[David Simpson]

Will my hon. Friend join me in praising young carers, who look after family members until Marie Curie or Macmillan move in? Their lives are detrimentally affected by the trauma. Young carers cannot be praised enough.

[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.