Child Cancer

Ronnie Cowan Excerpts

Monday 28th November 2016 Westminster Hall

[Ronnie Cowan (Inverclyde) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Davies. I welcome the opportunity to contribute to the debate as we continue the fight against childhood cancer. I am aware that the petition, which is the subject of today’s debate, is primarily written with reference to the NHS in England. As a Scottish MP, Members will forgive me for using the debate as a chance to highlight some of the local champions in my constituency who have done so much to help raise awareness of childhood cancer. Whether we are in Scotland or England, and regardless of our party affiliation, I hope all Members can come together to provide constructive suggestions for the UK Government. I hope too that the Minister is receptive to those suggestions in the spirit in which they are given.

We know that childhood cancer is relatively rare, yet in Scotland around 150 children are diagnosed every year.

[Stuart Blair Donaldson (West Aberdeenshire and Kincardine) (SNP)]

My constituent Sam Dorrance was five years old when he lost his battle with cancer earlier this year. Will my hon. Friend join me in congratulating Sam’s brother, Ethan, who has raised £10,000 for CLIC Sargent, and also Sam’s family and friends who have raised more than £65,000 for Super Sam’s fund for research into high-grade brain tumours?

[Ronnie Cowan]

Absolutely. I had the privilege of meeting the family when they were here for the British Red Cross event a couple of weeks ago. They are an inspiration and an example to us all.

The 150 individual cases that I mentioned mean 150 new families having to deal with the devastating consequences of illness every year. It is not only the health aspect of cancer that families must overcome, but the immense emotional and financial turmoil that the diagnosis can bring. Many parents will face extreme pressure on their relationship, in some instances leading to a breakdown of the family unit. Others will be forced to give up work. Combined with the additional costs of caring for a seriously ill child, it may mean that the family is pushed into poverty.

At this point, I want to address the Minister. In the Government’s response to the e-petition, they say that children and teenagers with serious or critical illness such as cancer are also expected to apply for disability living allowance or the personal independent payment. Is there some way we could have a simple process whereby a diagnosis becomes a tick in a box so that people do not have to apply for PIP or DLA? It should be a given that they need financial support. We know that and we should take one of those burdens off them.

Along with the child and the parents, siblings too will experience disruption in their own lives, including educational difficulties. Although we are able to quantify that there are 150 new cases in Scotland every year, we can never quantify the wide-ranging implications. It is encouraging that survival rates are improving, but I am sure we can all agree that we can always do more.

I am pleased that the Scottish Government are absolutely committed to providing the best possible care for children and young people with life-threatening illnesses in Scotland. I trust that different NHS bodies north and south of the border have a mechanism whereby they can share best practice on childhood cancer. Perhaps the Minister will outline whether that is indeed the case. Let us not stop at sharing best practice north and south of the border: we need pan-European, and in fact global, co-operation. It would be appalling to think that good substantial research anywhere in the world was not shared so that everybody could benefit from it.

In my constituency of Inverclyde, we have a champion who is helping to raise awareness of childhood cancer. Nathan Mowat was diagnosed with acute lymphoblastic leukaemia shortly before his fourth birthday. Since then he has endured hours of chemotherapy treatment and will need at least a further year of maintenance treatment. Chemotherapy can have a harsh effect on the human body. In Nathan’s case, it means that even a minor illness can now have serious ramifications for his health.

Nathan, with the support of his mum Gillian, his dad Paul and his sister Annabel, has managed to rally a huge amount of support within Inverclyde. In September, the Greenock Telegraph, Greenock Morton football club and a range of prominent local businesses and organisations pledged to glow gold and help Nathan raise awareness of childhood cancer. Glow gold was a great success, not only because it rallied community support, but because it made more people aware of the practical issues that people face as a result of childhood cancer. Whether in respect of bereavement, research, diagnosis or resources, we need an open discussion on how we can continue to improve our approach.

Finally, I thank Nathan for all his great work in Inverclyde. I look forward to seeing him fully overcome his illness. He will continue to inspire many people, and I am sure my parliamentary colleagues will join me in wishing him and his family the best for the future.

Diabetes-related Complications

Ronnie Cowan Excerpts

Tuesday 7th June 2016 Westminster Hall

[Ronnie Cowan (Inverclyde) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Pritchard. I thank the hon. Member for Dewsbury (Paula Sherriff) for securing this debate.

I unashamedly turned to a much more informed source of information than me while putting this speech together. My sister, Linda Irvine, has been an insulin-dependent diabetic for 36 years. She knows the system inside out and has experienced the good and the bad of the NHS. In that time, she has seen many changes in the treatments provided. In 1980, she was fortunate to be diagnosed on what she considered the cusp of change. She had been subjected to horror stories of painful injections and severe restrictions in diet, along with a lack of understanding from doctors and nurses not familiar with the medical condition. In those days, injections were delivered in glass syringes with barbaric steel needles, which had to be kept steeped in methylated spirit and which obviously restricted away from home activities. Insulin was bovine or porcine and the peak effect of it was three to four hours after administration, making the timing of meals a bit of guesswork.

Shortly after my sister’s diagnosis, a new synthetic form of insulin, termed human insulin, was laboratory-developed. That made it cheaper to produce in larger quantities. From 1982, human insulin started to replace animal insulin as the primary treatment. It was developed further in the 1990s and now starts to take effect within 30 minutes of injection, making control of blood sugars more predictable. Syringes also became plastic, smaller and had finer needles: much easier to carry on you if you were out. Syringes have now been replaced by pre-loaded pens that are much more convenient and easier to draw up.

The introduction of insulin pumps is also an increasingly available initiative that Linda benefited from during her last two pregnancies, but she was unable to keep them because of an allergic reaction to the needle. She was not born lucky. Food was also a big problem in those days, with no light or sugar-free options on the market and diabetic drinks or biscuits available only in chemist shops. They were overpriced and frequently unpalatable. Nowadays, there are many options and most are readily available in high street stores.

We might think that nowadays it is all plain sailing, but unfortunately it is not. Diabetes complicates life immeasurably. It takes the spontaneity out of everyday activities, particularly with children and grandchildren. “Can we go to the park?” “Wait till I’ve checked my blood sugar.” “Can we go swimming?” “I need something to eat first.” “Why do we have to leave? We’ve only just got here.” “I’m due a meal soon.” On occasions, after she had injected, usually in a public toilet, and when the restaurant service was very slow, she would slip into a hypo. “Why are you sliding down the seat, mum, and heading for the floor?” It is not only mums who suffer from diabetes. All four of my sister’s children were able to dial 999 and tell the operator that she was diabetic by the age of three.

If we are leaving the house now, Linda carries a large bag with two insulin pens, needles, blood monitor, testing strips, lancets, a bottle of Lucozade—other drinks are available—and some kind of carbohydrate such as a packet of crisps or a sandwich to have in case her blood sugars go too low. She always carries a card explaining that she has diabetes and two emergency phone numbers in case she collapses.

Travelling abroad through different time zones can really complicate matters, too—not to mention the embarrassment of carrying syringes through airport security. As for dietary requirements on airlines—don’t go there. Of course, another area of concern is driving. As with most medical problems, insurance is always steeper and more complicated, DVLA requirements more stringent, and licences harder to acquire and keep.

What does my sister have to look forward to? The long-term problems of diabetes are well documented: cardiovascular disease, kidney damage, foot problems, eye disease, nerve damage, tooth and gum disease, thyroid problems, skin problems, constant infections and, unsurprisingly, mental health issues. It is therefore a cause close to Linda’s heart that the treatment of children with type 1 diabetes should be as up-to-date as possible, to ensure that their exposure to long-term problems is minimised.

Linda is now waiting for a kidney and pancreas transplant. Current research involves stem cell transplantation and chimera pigs where embryos are created with organs hopefully compatible for human transplant. Of course that is controversial and raises all kinds of ethical questions. But what if it was your child? What if it was your sister?

World Autism Awareness Week

Ronnie Cowan Excerpts

Thursday 28th April 2016 Commons Chamber

[Ronnie Cowan (Inverclyde) (SNP)]

I thank the right hon. Member for Chesham and Amersham (Mrs Gillan) for bringing forward this debate. I am grateful for the opportunity to speak in it and to put my full support behind the motion.

As I prepared my speaking notes, it became obvious that, while Members in this Chamber have an important role to play in raising awareness of autism, the most valuable insights will always come from those with direct experience of the condition. They are the ones who know whether services are working effectively and they know through experience what changes we should make to create a more autism-friendly society. It is, therefore, appropriate to make sure that their voices are heard in the House of Commons today. There are two people in particular that I will highlight. The first is a constituent of mine whose son has autism, and the second is Vicki McCarthy, the founder of Reach for Autism, a non-profit organisation operating in my constituency of Inverclyde.

I have a constituent who moved to Inverclyde with her six-year-old son in 2003, and her experiences raise a number of concerns. She raised a concern with me regarding an inconsistency among school staff: some worked very well with autistic children, while others lacked a basic understanding of situations that could make an autistic child uncomfortable. She also highlighted a lack of age-appropriate activities for teenagers with autism. Teenage years can be a difficult time for anyone, let alone those with autism. My constituent believes that greater co-ordination between social services and parents could lead to activities that better reflect the needs of their teenage children.

My constituent also raised concerns about the bureaucracy and poor communication of local social services. She felt that, while access to information was easily obtained through schools, contacting social services was a laborious process, with no guarantee of assistance at the end of it. My constituent summarised the situation best when she said:

“I would describe our life as one big battle for every tiny scrap of help and as someone who is naturally quite a shy person this has brought its own difficulties.”

Many parents with an autistic child will undoubtedly relate to those concerns, and we must recognise their commitment in continuing to campaign tirelessly for greater support to be made available.

One such organisation offering that support is Reach for Autism, which was established in Inverclyde by Vicki McCarthy. Reach for Autism offers a wide range of support, from teacher training to mentoring programmes. It currently supports more than 60 autistic people, including 44 children, eight young adults, four volunteers and a member of staff. It is difficult to overstate the importance of those services, not only for autistic people, but for their families. Lifeline services such as those established by Vicki can transform people’s lives.

If we invest in people with autism from a young age, we can decrease the chances of autistic people suffering from mental health problems as a result of social isolation or low self-esteem. That investment ensures that people with autism feel valued and respected, are prepared for employment and can live more independent lives.

Yet establishing and maintaining that support has been difficult. Reach for Autism has no core funding, and running costs are met entirely through donations and its own fundraising. The organisation and its vital services simply would not exist without the energetic support of volunteers and the determined efforts of Vicki. Whether it is individuals and their families or organisations themselves, those touched by autism are faced with the same obstacles: a lack of funding; a lack of certainty over future support; and a lack of public understanding of the condition.

I hope that other Members will join me in declaring that people with autism, their families and the organisations that support them deserve better than this never-ending uphill struggle. All people, including those with autism, deserve the chance to realise their full potential, and by increasing awareness we can take important steps towards becoming a more autism-friendly society. I know that I am better for my increased knowledge and would like to thank Vicki and all those who have raised my awareness and understanding.