It’s nearly time for the UKs premier brain tumour awareness raising campaign -#WearAHatDay, and it’s time to get our Parliamentarians involved too!

The big ask of you this week is to send the template tweet below to your MP ( emailing them is best and this page can help with their email addresses), virtually every MP has a Twitter account. Just ask them to tweet it out next week alongside a photo of them wearing a hat. Don’t worry if some of you are in the same constituency as others. If they receive it more than once they will be even more inclined to act 😊

I have a very bold target for the number of MPs we can get to do this so please, please help me this weekend.

“I’m proud to be supporting @braintumourrsch on Friday 26th March for #WearAHatDay🎩Join 1000’s taking part at home, work or school and raise vital funds to help find a cure for #braintumours. Register here to receive your FREE fundraising pack➡️ https://bit.ly/3elIjbU #BTAM RT”

On 03 March Hilary Benn MP tabled the following written question:

To ask the Secretary of State for Work and Pensions, what assessment she has made of the merits of repeated DWP assessments where an individual applicant has had a (a) brain tumour or (b) severe head injury when there is no evidence that the person’s condition will improve.

On Monday evening Justin Tomlinson MP Minister of State at the Department for Work and Pensions provided the following answer:

In both Work Capability Assessments (WCA) and Personal Independence Payment (PIP) assessments, healthcare professionals advise on a review period that is appropriate to the individual claimant. In the WCA, if a claimant has a condition that causes severe functional impairment and there is no realistic prospect of recovery of function, they can be placed in the severe conditions group and would not be routinely reassessed. In PIP, claimants receiving the highest level of benefit whose functional ability will not improve will receive an ongoing award with a light touch review at the 10-year point. The up-coming Health and Disability Green Paper will focus on how we can make further improvements to assessments and seek views on future changes.”

The reassessments for most of our brain tumour patients are annual and, from the wording of the statement, this may reflect that they are not necessarily receiving at the ‘highest level of benefit'.

Based on feedback from long term patients with issues that prevent them from working the ‘trick’ appears to be to interpret the forms to achieve the required number of points to trigger support.

There is a skill in this which indicates that the central processing is at best arcane but in reality, financially constrained. These constraints aren’t unusual of course however this does seem to lead to some odd decisions and in cases some real hardship where despite clinical stability the next decision goes against the applicant. 

It is a complicated and difficult business for the hospital staff who are required to produce letters of support constantly.  It is a very stressful business for patients and carers as seemingly inconsistent interpretations are put on the evidence to effect payments, creating a climate of uncertainty and stress on top of the diagnosis and care issues. 

We asked the Chair of our Scientific and Medical Advisory Board, Emeritus Prof of Neurosurgery, University of Birmingham and Queen Elizabeth Hospital Birmingham, Garth Cruickshank to comment on Mr Tomlinson’s answer and he told us:

"I welcome the Green Paper and hope that it will provide the opportunity to look carefully at the complex and unnecessary levels of stress caused to patients by these repeated assessments. The current WCA and particularly the overly frequent PIP assessments for brain tumour patients add a level of unaccountable means testing beyond the clinical determination of disability, that most certainly disadvantages those who are unable to perform common tasks or deemed to fail the often inappropriate, inclusive criteria. Often the results are unfair and inexplicable. This Green Paper offers the chance to rectify the current unsatisfactory process and demonstrate a conscience about looking after those who can’t look after themselves. Healthcare professionals are called that for a reason. They deal directly with these patients and are aware of their difficulties - the evidence is that we should trust their assessments.”

We shall be taking this up with Government Ministers through the All-Party Parliamentary Group on Brain Tumours for which we provide the secretariat.

For those of you joining us at our virtual Westminster event on Tuesday evening you should already have received your zoom diary invite. For those of you who invited your MP and have yet to receive a reply – ask them again. I know you are a tenacious bunch, but don’t just send one email and then wait for the reply, MPs are busy people and have a mountain of emails to deal with each day, we can forgive them for missing the odd one!

It takes a terrier like capacity to be a campaigner but in the past week I have met with three MPs and all of them have been motivated to engage with us through the lobbying of their constituents.

You really are making a difference.

Keep at it – keep on doing what you are doing – we are the right people doing the right thing for the right reasons. And there are so many of us – the current #braintumourpetition total is over 105,000

Related Reading

• The main campaigning platforms at our disposal
• Engaging your Member of Parliament