Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Daniel Francis Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Dr Tidball]

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating:

“For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

[The Chair]

Dr Mewett, you are nodding.

Dr Mewett: Yes—not nodding off, you will be pleased to know.

[The Chair]

It is not that late yet.

Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.

Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.

[Daniel Francis]

Q Could I clarify whether there is also a review of keeping two clinicians in the process? We heard yesterday that that is not the case elsewhere.

Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner-administered voluntary assisted dying.

[The Chair]

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.

Lobular Breast Cancer

Daniel Francis Excerpts

Tuesday 10th December 2024 Westminster Hall

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is an honour to serve under your chairmanship, Ms Vaz. I thank my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) for securing this debate, and I concur with my hon. Friend the Member for City of Durham (Mary Kelly Foy) about health outcomes for those diagnosed with cancer.

One of my most difficult days was when my wife was diagnosed with cancer. She has now thankfully recovered but, looking back at her cancer and her diagnosis, the fact that it was caught early and was seen as a cancer with greater success outcomes shows the disparity of outcomes—particularly for those with lobular breast cancer, as my hon. Friend the Member for Dulwich and West Norwood described.

I pay tribute to the Lobular Moon Shot Project, which aims to give lobular cancer the attention and funding it needs, so that it can be better understood. Lobular breast cancer is the second most common form of breast cancer and, as has been said, accounts for about 15% of all breast cancers, yet there is still not enough research being undertaken.

My hon. Friend mentioned my constituent Emma, who is in the Public Gallery. Emma recently attended my constituency surgery and told me of her experiences with lobular breast cancer. Because of the way it presents, it was not picked up by a mammogram, and it took an MRI—facilitated through a routine private healthcare check—for it to be diagnosed. As has been said, it was initially thought to be a stage 2 cancer, but it was in fact stage 3. Following her diagnosis, she underwent a double mastectomy, followed by chemotherapy for six months, and then 15 sessions of radiotherapy. In Emma’s case, her cancer is likely to return, which leaves her with a very uncertain future for years ahead.

On the current data collection framework on lobular breast cancer, there is a lack of documented research about outcomes for and recurrences of lobular breast cancer. Indeed, there is currently just one trial available in the UK for lobular breast cancer patients. This leaves women like Emma unprepared for the potential impacts that the cancer will have on them further down the line. Given this position, I would be grateful if the Minister could address not only the points raised by my hon. Friend the Member for Dulwich and West Norwood in her asks, but her comments on what can be done to secure more regular MRIs—as was shown in Emma’s case, having more regular MRIs is the only thing that will pick this up—and to ensure that there is greater data collection and transparency on the effects of lobular breast cancer.

Cumberlege Review: Pelvic Mesh

Daniel Francis Excerpts

Thursday 5th December 2024 Westminster Hall

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Mr Stringer. I thank my hon. Friend the Member for Harlow (Chris Vince) for raising this important issue. As he did with his constituent Debbie, I recently met with my constituent Paula, who shared her experience of the impact of having pelvic mesh fitted.

In 2015, Paula had her mesh fitted to resolve urinary incontinence, but her experience with pelvic mesh has been painful and inconvenient. Between 2020 and 2023, she had various painful bladder stones that attached to the mesh, and in July 2023 she was informed that the mesh had eroded into her bladder. I understand that the mesh is now cutting into Paula’s urethra, causing her terrible pain and incontinence. Paula will now need to undergo three major operations to remove the mesh, and she has told me of the toll that it has taken on her. In her own words, her life has

“gone from working full time, holidaying, socialising and running, my big passion covering 5k around three times a week, to losing my job,”

not being able to run and feeling “isolated and very depressed”.

Paula now plans her life around the availability of toilet facilities. She is unable to take long journeys and lives in fear of the issues that incontinence causes her. As we have heard, this is an issue that affects many women who, like Paula, say that they did not have the risks and potential harms of surgical mesh properly communicated to them.

It is not mandatory for individuals to report the side effects of surgical mesh to the NHS, so many women like Paula were not properly informed of the potential long-term effects on their health and wellbeing. Requiring side effects to be reported would ensure better regulation and allow patients to fully understand the implications of medical procedures, so I will welcome the Minister’s comments on the points raised by Members and the need to implement in full the recommendations of the Cumberlege review.