This week the U.K. goes to the polls. Here is an example of one MP, my MP Keir Starmer helping me, a constituent in a desperate health crisis, when the Health Secretary for State said “sorry I cannot be more helpful”- Jeremy Hunt offered no help at all.
Last April (2016) I had a £200,000 fundraising target to get access to potentially life saving cancer treatment, unavailable on the NHS.
Unavailable? Are you an immigrant? Are you on a student visa?
Some of the puzzling questions I faced. I was born in England, paid taxes for over 10 years of my professional working life, in addition to bringing down my student loan. I was 31, when diagnosed with cancer, which put an eventual end to my working life a year later.
The drug my specialists wanted to prescribe hasn’t gone through the NICE process to be approved on the NHS for my type of cancer. I did not qualify for the clinical trials as they were looking for 1st line patients only (i.e. those who have had no previous treatment). The research for the drug has shown very encouraging results for the genetic make up of my cancer, a 70–80% response rate.
The doctors thought I was a good candidate for this treatment and put in an Individual Funding Request to NHS England in December 2015, with the hope of it being accepted and me getting the drug. However, in April 2016, my oncology team informed that the request would not be accepted. A similar application had already been rejected for another patient, hence NHS England didn’t even look at mine.
Untreated my tumours were growing, and showing signs of spreading into other organs. This trajectory would inevitably result in pain and further suffering.
My last resort
When my friend Ru suggested fundraising, several questions crossed my mind.
Would dying be easier? Am I worthy to live? Do I deserve this treatment? If we were to raise the money, will it even work?
Coming out to fundraise has been the most challenging experience I have ever faced. I don’t say that loosely.
I mean, the initial cancer diagnosis was tough (December 2014).
Being told there was more cancer was tough (September 2015).
Hearing there was no more treatment was tough (December 2015).
18 cycles of chemo and a major surgery inside a year, nobody said it would be easy.
The words “Unavailable on the NHS” are ones that have painstakingly been repeated too many times.
Pleading for my life was the last thing I wanted to do. I knew I had a team of friends and family who would do their best to support me, but put aside the daunting £200,000 target, the thought of having to beg was my last option.
Fundraising was me fulfilling a “duty to seek treatment”. But parallel to this I looked for a political route.
The political solution
That day in April 2016, when the oncology team confirmed that the NHS wouldn’t accept my Individual Funding Request, I looked up to see who my MP was and discovered it was Keir Starmer (not even a year into the role, having taking over from Frank Dobson). Coincidently, he had a public ‘Meet your MP’ meeting scheduled for that very same day.
There was no time to waste, my uncle and I went to that meeting, met Keir and spoke to his caseworker, who took on my case immediately. Over the next few days, weeks, and months several phone calls and emails were exchanged between us.
Keir contacted the Simon Stevens the NHS England Chief Exec asking for clarification (letter 1).
There was back and forth communication followed by the Chief Exec of UCL Hospital relaying the NHSE position. One line said it all;
‘There is no NHS funding route for this drug/indication at the current time’ (letter 2).
Keir then wrote to Jeremy Hunt, Secretary of State for Health. The letter (3) clearly states my case, as well as highlighting that NHSE can’t help.
The response (letter 4) didn’t even come directly from Jeremy Hunt. Instead from David Prior, a Parliamentary Under-Secretary of State, which happens to be the lowest of three tiers of a government minister, junior to both a Minister of State and a Secretary of State. I gather the more senior people were forcing junior doctors to accept new contracts.
The advice given was to contact the NHSE Chief Exec directly, which in fact was the very first action Keir took. It is clear that Jeremy Hunt’s office took zero responsibility, and provided absolutely no helpful advice or leadership to help. They passed the buck.
Keir’s support
My MP didn’t stop there. Seeing as we were not getting the political traction from the Government, Keir helped me with my fundraising campaign.
Media coverage was gained following his correspondence. Firstly in the Evening Standard, and then on ITV News London. Two local papers the Ham & High and Camden Journal, have featured my updates multiple times.
Keir along with several Camden Councillors attended a fundraising dinner as part of my campaign. My councillors have provided continued support from the beginning. Politicians responding to my appeal.
In September 2016, Keir hosted a reception event for me in the Houses of Parliament. Once again I had support from Camden councillors, in addition to fellow Labour MP Tulip Saddiq.
Disappointingly no one from the Department of Health attended.
Community support
I have been blessed with the support of so many people, many of whom I will never know. Me, my friends and family had no idea how we would get anywhere near the target but to date we have raised £186,000 which has allowed me a year of treatment.
I continue to hear emotional stories of how people heard of my campaign and decided to help. I am very humbled and grateful for everyone who has participated in my story.
Health Update
A year of treatment has seen my tumours continue to reduce in size, by over 50%. The treatment is now on hold, and I will have frequent scans to monitor my situation. These results and course of action are in line with the research studies. There is still a way to go but compared to the desperate space I was in last year, it is a miracle I am in this position.
The upcoming election
It is clear to me the approach of the two main political parties are at complete polarities. When we take away the General Election Campaign, the (non)-TV debates, the hypothetical question of whether a ‘leader’ will push the nuclear button or not, its easy to forget the day to day. The stuff that actually goes on behind the scenes in real life (and death) situations. I can proudly say that one party, that is the Labour party actually cares. This is based on my own experience. The Conservatives in Government on the other hand didn’t taking no responsibility.
My example may be on a micro level, but no doubt it is a reflection of what is going on, in the bigger picture. There are other patients who are in similar situations to me, many of whom have approached me for advice.
The NHS
I have the utmost respect for the NHS. My nurses, my doctors and the support staff have been incredible with the care that they have provided. I still rely on the Service for my other health needs.
Yet it is clear NHS is in trouble, this is a topic for a different post altogether. But there is only one party that I can trust to do the right thing for the NHS, that is the Labour party.
Brexit
I bring up Brexit because Keir was made Shadow Brexit Secretary in September 2016. Having seen him work first hand for me, I know I would rather have Keir leading the negotiations with the EU leaders as opposed to the current team. Described by Jon Snow as ‘star lawyer of his generation’, and the fact that he gives a damn about everyday people, people such as me.
He could have stopped at the level of Hunt’s office and say there’s nothing further he can do for me. Instead he carried on helping, being part of the solution to me getting access to the drug, albeit outside the political route. I thank him and his team for all their support.
Polling day
Thursday 8th June, we have a choice. One, to take the time to make a trip to the polling booth and two, choose the party that cares, that actually gives a damn, that will do the right thing ‘for the many’. #VoteLabour
