Last week we congratulated one of a campaigners for persuading Hilary Benn MP to write to Matt Hancock, the Secretary of State for Health and Social Care, asking for what reason only £6 million of the £40 million in funding allocated for brain tumour research has been allocated to such research to date; and if he will make a statement.

Also last week Helen Hayes MP ( who is coincidentally an officer on the APPG on brain tumours) asked the Secretary of State for Business, Energy and Industrial Strategy, what support his department is providing to the life sciences sector to help ensure that life sciences research does not suffer long term damage as a result of the covid-19 lockdown.

Both questions, and there were others, of huge interest to us, as brain tumour campaigners. But it is summer recess and MPs are no longer in Westminster – so is that it?

Do we start afresh in September and all of this good work will be forgotten?

The good news is no, that isn’t the case. When Parliament is in recess it is not possible to table written Parliamentary questions but ones that have been tabled, like the Hilary Benn one, can still be answered, and, with his profile, very likely will be over the summer. What may not happen is that responses will be recorded in Hansard until everyone returns on the 1^st September but rest assured, we will be seeking and expecting answers and when they come, I will report back to you in our Friday updates ( hugh@braintumourresearch.org if you would like to be added to that database).

The summer will also give us the opportunity to write more questions too, and to ensure these draft PQs are with friendly MPs (or ones who have a brain tumour campaigner in their constituency!) requesting they are tabled as soon as Parliament returns in early September.

Please do help us with the content of these questions by telling me what is on your mind, what have you learnt on your brain tumour journeys? We will of course be focussing on research funding but we want to know the whole picture because so much that goes wrong in people’s experience comes from an ignorance of the disease and that lack of knowledge has its root in lack of basic scientific research and understanding.

The other thing I’d like to remind you today is the value of sharing your experiences with our team who can then share your stories with a wider audience – as you will have heard me say before, people cannot support us unless they know we exist and personal stories touch people.

Your stories motivate me every day and they will do the same for others.

Remember our approach is always collaborative, we work with you because we all want the same thing. Also, the resulting story will be in a form that will be helpful when writing to your MPs to explain why you are so passionate in your support of Brain Tumour Research and our call for funding parity. Email me (hugh@braintumourresearch.org)  if the time is right for you to share your story and to get an idea of what a story from a campaigner might look like please click here – than you so much Amanda and Mark.

I think I have been a bit guilty of being, not just Westminster focussed, but focused on the House of Commons in these blog updates – my apologies – there is the House of Lords as well as the parliaments of Northern Ireland, Scotland and Wales who all are chock-full of campaigners, activists and agents for change- any connections to these noble establishments would be much appreciated and I will always endeavour to make sure our word is heard in these locations just as it is in the House of Commons. It is an indiscriminate disease and we will continue to reflect that in our approach.

Related reading:

• Media plays key role as we work to find a cure
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