Vote Like A Mother- ‘Our NHS literally keeps my son alive”

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In this mini series, I’ve asked women I respect and admire to share their perspectives on this upcoming election. A term I use to describe what I do in my coaching is “GET WOMEN SHIFT FACED”. Never have we needed a collective shift in perspective more then now, and we are most likely to achieve it by sharing our stories.

My first guest writer is unable to share her real name due to the nature of her work. This won’t stop you from connecting to her story.

I remember being told as a young girl, ‘don’t talk about religion and politics’! So
began my academic and purpose path in sociology and psychology, working with various vulnerable groups and ending up working with children and families in trauma work. It’s my job to have difficult conversations, question things, analyse.

Voting and it’s significance for women has always been important to me; in becoming a mother it’s about protecting future generations. The most devastating issue at the moment for me, is the real likelihood of losing our NHS function and the financial cost to the NHS in a trade deal with the US. The first year of my son’s life was shrouded in a cloak of worry, fear, and accusation. He had unexplained bruising and marking, finally being diagnosed with a blood clotting disorder, Severe Haemophilia B. We all have 12 clotting protein factors, they act like a domino effect in helping the blood to form clots. He has no recordable level of factor 9; he is at increased risk of intracranial, joint and muscle bleeds, without treatment in the ‘non-developed world’ his life expectancy is around 11 years.

In the States, treatment access is variable, many young men and children with the condition in the states require high levels of medical insurance which would mean under some policies children like my son would have to wear a head guard, becoming more dis-abled by their disability, and probably be exempt from most sporting activities.

Luckily for us, we have our NHS – free at the point of delivery. We’ve had stays in GOSH and the Royal London, he’s had a portacath inserted (medical device under the skin), he has 24 hour access to the best team in London, open access to the local childrens ward, and we have been trained to prepare his medication and inject it both as a preventative and when he has a bleed. Our NHS literally keeps him alive, and us as a family sane in knowing we have this service for free. A 2017 study looking at the annual cost per patient for severe haemophilia treatment at €129, 365 in the UK.
(https://ojrd.biomedcentral.com/articles/10.1186/s13023-017-0660-y)
In the USA, this annual cost is reported much higher, at €244,000, estimated up to 1 million US dollars with complications (https://khn.org/news/of-miracles-and-money-why-hemophilia-drugs-are-so-expensive/)

The trade deal is likely to affect the prices the NHS pay for drugs. Labour have been using the headline from which Johnson missold Brexit ‘350 million for the NHS’
(Side note: Don’t get me wrong, I’m all for democracy, ‘Leave’ was the *albeit rather marginal* win, but Brexit was sold on a lie and I feel as no one has been held accountable for these lies then we ought to have a referendum)
to Corbyns headline ‘500 million taken from our NHS and given to US drugs companies’.
I know politicians like to band about figures, rather erroneously. So I checked on Fullfact, an independent fact finding charity. They note;

“According to the latest figures from the Organisation for Economic ­­Cooperation and Development, in 2017 the UK paid roughly $470 per person (for medical care) while the USA paid $1,220. That’s around two and a half times as much.

The NHS in England spent around £18 billion in total on drugs in 2018/19. If per person spending increased by around two and a half times following a US trade deal then that number would be £45 billion. That’s an increase of £27 billion or about £519 million per week.”
(https://fullfact.org/health/500-million-nhs-drug-prices/)

So Corbyn may just be right.
I looked into the pricing of my son’s literally life saving, life long treatment. Reuters reported;
“Unlike in Europe and elsewhere, where price controls help keep healthcare costs down and drugs may be rejected outright if they are viewed as too expensive for the benefit they provide, the U.S. Food and Drug Administration is not allowed to take cost into consideration in approving new medicines, and no such price controls on what drugmakers may charge for their products exist.

Extremely high prices for lifesaving drugs for rare diseases and genetic disorders have come under less payer pressure because they treat so few patients, even though they must be taken for a lifetime. In addition, the premium pricing had long been perceived as necessary to encourage pharmaceutical companies to develop treatments for extremely rare diseases in order to make the payoff worth their while”
(https://www.reuters.com/article/us-biogen-hemophilia-idUSBREA3H0KL20140418)

So a trade deal could make those with rare conditions or lifelong disorders susceptible to medications which accrue higher profit margins.
The cost of those medications may become insurmountable.
Many families impacted by different medical issues are worried. The procurement and tender of medications post Brexit is unknown. The Haemophilia Society state NHS England tender of medications means each company has to ensure they have 12 weeks worth of supply. Consultants and our haemophilia centres have told us, they just don’t know. Changing to other products can produce an inhibitor which is a rejection of the new medication, increasing frequency of injections and efficiency, therefore risk.

NHS England has advice on making sure organisations have a supply disruption policy, and a stockpile of just 6 weeks of medication, yet in Sept 2019, 28% of all medications did not have the 6 week stockpile of meds if there was a no deal Brexit and only a quarter had an alternative trade entry route than Dover to Calais which is likely to have a huge impact post Brexit.
(https://www.pharmaceutical-journal.com/news-and-analysis/news/more-than-a-quarter-of-medicines-yet-to-be-stockpiled-for-no-deal-brexit/20207118.article)

I know my particular situation is very specific. But its a much wider issue. A list of medications sources are concerned about, either due to low supply or risk of high cost post Brexit has been compiled. In that list; cancer drugs, anxiety and depression medications, steroids and diabetes meds. Impacting widely, affecting many.

I’ve had friends and family members who want to vote Labour but are anti Corbyn. Leaders are just figureheads, composed by spin doctors and are just a face. The system as it is, is a relative farce. But apathy gets people nowhere. Someone recently said to me, ‘I don’t vote for the Conservatives just because I think Boris Johnson is a *ThunderFlunk* , I disagree with their policies and the chasm between have and have nots’.

For me it’s policy, not person. Figureheads change; let’s face it, those who for whatever reason voted Conservative in the last GE didn’t vote for Theresa May or Boris Johnson themselves. Don’t you think the NHS is worth fighting for?

#votelikeamother #votelikeamotheruk

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