Support for Life-shortening Conditions

Debate between Stuart Andrew and David Simpson

Tuesday 7th June 2016 Westminster Hall

[Stuart Andrew]

The hon. Gentleman makes an important point, which I will come to later.

Some 49,000 children and young people are living with conditions that are life shortening, by which we mean conditions for which there is no reasonable hope of a cure and from which most of those young people are expected to die. The conditions can include conditions for which curative treatment may be feasible but can fail, as is often the case with cancers or congenital heart diseases; conditions for which premature death is inevitable but where there may be prolonged periods during which the child is well, such as Duchenne muscular dystrophy; progressive conditions such as Batten disease, without any curative treatment; and irreversible, but non-progressive, conditions that cause severe disability, leading to susceptibility to health complications and premature death, such as severe brain injuries.

The number of young people affected by one of those four categories of condition is equivalent to one child in every single school, and 50% of the 5,000 children who die in the UK each year will have one of those conditions. Of course, the number of people affected in other ways is much higher. Parents, siblings and other family members and friends can bring the number close to 400,000 people, which equates to more people than the population of the city of Leicester.

The 49,000 children and young people need palliative care from the point at which their condition is diagnosed or recognised—often at birth—until the end of their lives. There is an entire package of outcomes that good palliative care should achieve, which is quite different from that which adults receive given that children often need care throughout their entire life. Good care should meet children’s physical, social and emotional needs, enhancing their quality of life to ensure that the child and their family can come to terms with such life-altering issues.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining this important debate. I am sure that many people here will have come into contact with children with such difficulties. Does he agree—he touched on this point—that more psychological help is needed for the parents, especially when the children are approaching the time of death? It is a very difficult time. There need to be very quick results. Help is needed for the parents as well.

[Stuart Andrew]

I absolutely agree. During the time I spent in the hospice movement, I learnt that those final few weeks are incredibly distressing. None of us can possibly imagine what it is like unless we have been through it. The support for the parents and the wider family is what makes much of what happens in the children’s hospice movement such a success.

The care must be age appropriate—suitable for a child’s particular stage of development—and administered by people who have the exact skills needed to get the person through their care pathway. A comprehensive local children’s palliative care service spans health, social care and education. Joint commissioning is vital and should be accessible 24/7, 365 days a year, from diagnosis to bereavement. As a result of the complexity and severity of patients’ needs, the transition from children or youth services to adult services can be particularly daunting.

Ovarian Cancer

Debate between Stuart Andrew and David Simpson

Wednesday 12th October 2011 Westminster Hall

[Stuart Andrew]

I am grateful for that intervention. I agree absolutely that anything we can do to ensure early diagnosis of conditions can only help. In the long term, it is better for the individual concerned, and certainly better for the rest of the family, who go through equal concern.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on securing the debate. Not long ago in my constituency, we ran an event to raise money for ovarian cancer treatment. An astounding finding was the number of young women aged 18 to 25 who are affected. I was astonished, because my impression had been that the disease affected older women, but it seems to be on the rise among younger women and is known as the silent killer. Does the hon. Gentleman agree that early intervention is vital? That could be done with blood tests, which some GPs have called for, and perhaps in schools, to identify this tragic killer of women.

[Stuart Andrew]

The hon. Gentleman makes an important point. I will talk about early diagnosis, which is crucial, as is awareness—making people aware of the symptoms. That is crucial in the campaign to fight this terrible disease.

I return to the letter that I was quoting from, which is relevant to the point that the hon. Gentleman made:

“I really hope the message regarding this disease can increase, as I wouldn’t want anyone else to suffer as my mother did. If she had gone to her GP straight away when she presented with symptoms and the GP acted straight away, then she may still be with her family, who miss her so much.”

That is a powerful testament to the problem that the disease causes.

According to figures from the National Cancer Intelligence Network, only pancreatic cancer involves a higher proportion of people diagnosed with the late stage of the disease. but with ovarian cancer, unlike pancreatic cancer, we know what the symptoms are. That was not always the case. The hon. Gentleman referred to it as the silent killer, which is often how it is referred to, but in most cases the symptoms go unrecognised for some time by the women or their GPs. It is alarming that Target Ovarian Cancer has found that one third of women waited six months or more after visiting their GP for a correct diagnosis. That is staggering.

The National Institute for Health and Clinical Excellence has published guidance on the recognition and initial management of ovarian cancer, and listed symptoms such as persistent bloating or increased abdominal size, abdominal or pelvic pain, difficulty eating and feeling full quickly, and the need to urinate more frequently. If women experience such symptoms frequently, particularly more than 12 times a month, they should undergo tests.