Our Policy & Public Affairs Manager Cameron Miller, reflects on Tessa Jowell’s moving House of Lords debate today
Baroness Tessa Jowell has bravely decided to talk about her diagnosis for the first time this week, using that experience to help change and drive improvements in cancer treatments and care.
A life personified by so many fights of this nature, it is fitting that that she take on yet another with the same determination and courage she has shown.
The debate in the House of Lords on Thursday was appropriately filled with glowing tributes to Baroness Jowell, and many peers shared their own personal experiences of cancer that has touched their lives.
What Baroness Jowell’s and the many other Noble Lords and Lady’s, involvement showed is that the patient voice must play a pivotal role in the shaping of treatment and care. Baroness Jowell spoke of the importance of patients being in control of their treatment and taking more risks.
This is frequently what we hear from patients and their families on our Support Line. Often they are bolder and willing to take considerable risks. Indeed if they have been given a terminal diagnosis they often comment that they don’t see any reason why they shouldn’t.
Though the current system hasn’t allowed them to. As such, patients will often self-medicate, with one surgeon telling us in confidence that they suspected that 90% of his patients were self-medicating in one way or another. All this does is drive the problem underground and leads to people looking at any and every possible option from the deepest and darkest corners of the internet.
A proper system should facilitate safe risks that allow patients to retain control of their treatment and let researchers and clinicians learn from their bravery. Is there any denying that if patients were consulted on this, they would have reached another conclusion many years prior to this?
Baroness Finn with one of the most electrifying comments during the debate said that patients “should be able to rage against the dying of the light, and keep hope alive.” She confirmed that there would be no cure for cancer without patients being allowed to take this risk, and we should fully support anyone who wants to try an innovative drug as we fight to offer to hope those who face no other option.
In another impassioned and lively contribution, Lord Freyberg talked about the difficulties we have faced at The Brain Tumour Charity in accessing data from health institutions in this country, both in regards to the huge bureaucratic elements and the cost. These barriers come at the same time as patients are telling us that they are happy for their data to be shared, 97% said in a survey we conducted last year that they would be willing to give my medical and health data to our databank to help improve brain tumour treatment and care.
Patients’ involvement in the decisions being made at NHS Digital and Public Health England would surely break down these obstacles as the institutions, which are publically funded, would realise that they are out of step with the feelings of the population that they are there to serve.
This intervention really is a key reminder that patients, whom Baroness Jowell personifies in so many ways, are the people who should be leading our work at the front and centre.
It is one of the reasons I am so proud of The Brain Tumour Charity’s Research Involvement Network (RIN) and Policy Involvement Group, because we listen to the community, what they want and ensure that their voice really does run through everything that we do. It is now time for the NHS to follow suit.