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What is an APPG?
APPG stands for All Party Parliamentary Group. These are made up of MPs who form an organised group focused on a particular topic and meet to discuss with others who are interested, such as charities, patients and healthcare professionals. Although they have no formal power, APPGs are a useful platform to share the voices of those affected by an issue (or those that represent them) with MPs, so they are aware of the challenges and issues these people face. They will then raise these issues with the relevant government departments, ministers or other policy makers, ideally helping to solve the issues. APPGs are sometimes run by MPs themselves, but they are more commonly run by a secretariat, which is often a charity working with people affected by the issue covered by the APPG.
What does the APPG on Blood Cancer do?
The APPG on Blood Cancer’s main purpose is to raise awareness and promote the needs of blood cancer patients among the key stakeholders, and to create a forum for broader issues affecting blood cancer patients. The secretariat for this APPG is Blood Cancer UK and it is chaired by Henry Smith MP.
What does the APPG on Stem Cell Transplantation do?
The APPG on Stem Cell Transplantation works to inform parliamentarians about the use of stem cell transplantation in saving lives, to facilitate debate and scrutiny on the collection and use of adult stem cells and umbilical cord blood in the UK, and to promote the expansion of stem cell donation in the UK. Anthony Nolan provide the secretariat for this APPG and Mark Tami MP is the chair.
Both of these APPGs have come together to launch this particular inquiry into the impact of COVID-19 on blood cancer services.
What is an inquiry?
When the APPG identifies a need for more data, information or analysis of a particular issue, they can call an inquiry. An inquiry has a topic (e.g. the impact of the COVID-19 pandemic on blood cancer patients and services) and includes a number of questions within the topic that the APPG would like to know more about. They appeal to all those who could have knowledge and data on this issue, such as charities, healthcare professionals and organisations to submit evidence.
Once all the evidence is collected and reviewed the APPG will often publish a report and may also launch a campaign to affect change or influence actions to solve the issues.
What did Leukaemia Care say in response to this inquiry?
The inquiry was launched to look at how the COVID-19 pandemic has affected blood cancer patients on a range of topics including vaccine efficacy, treatment, diagnosis, waiting times, quality of care, psychological impact and the NHS workforce. The APPGs appealed to the UK Government, NHS England, healthcare professionals, pharmaceutical companies and patient organisations (e.g. charities) to submit evidence for review.
At Leukaemia Care we collected evidence from a range of different internal sources including several of our patient surveys, feedback from our medical advisory panel, anonymised feedback from support groups and patient panels as well as information from our helpline calls and advocacy cases. We also analysed external data, especially in response to questions about diagnosis, which included the CancerData dashboard among other sources.
We’d like to thank all patients for your input into our surveys, patient panels and all other feedback and also our medical advisory panel, both of whom have significantly helped to inform our response.
Our analysis of the evidence indicated an increase in emergency presentations of leukaemia during the pandemic which we think indicates that patients have been less likely to present to the GP with milder symptoms and have waited until symptoms have been more severe. This might have a negative effect on prognosis and outcomes and we have asked NHS England and Public Health England to provide more granularity in the data on emergency presentations, including splitting it into all 4 most common leukaemia types and breakdowns by specific route to presentation. We believe having access to this specific data will help us to understand the impact emergency presentations have on diagnosis and outcomes.
We also presented evidence on the impact of treatment, including some patients who reported that their IVIG treatment for CLL had stopped or was paused during the pandemic. Patients told us that there have also been delays to accessing blood tests and test results, which could potentially have a knock on effect on treatment plans. We noted the impact on clinical trials being paused or slowed down and the effect this could have on treatment options for patients as well.
We highlighted the changes patients have experienced to their appointments, both in type of appointment (e.g. phone calls) and frequency. In our most recent survey in July 2021 84% of you reported a change in location of appointments (e.g. from in person to phone), while 15% reported a change in frequency. We demonstrated how crucial it can be for a leukaemia diagnosis that GPs can see patients face to face, as physical examinations often detect the non-specific symptoms of leukaemia that remote consultations cannot. We included plenty of qualitative data on this topic from your own personal experiences with remote consultation that you shared with us, as well as healthcare professionals’ views on the challenges of remote appointments and the effect these might have on their ability to make clinical evaluations. We also highlighted that the need for increased awareness of the signs and symptoms of leukaemia remains prevalent and we hope to work on this further through our ongoing Spot Leukaemia campaign and the support of others on this.
You told us about the additional psychological strain of being diagnosed or treated during a pandemic. From hearing you have leukaemia alone, to weeks or months in hospital with restricted or no visitation rights, to adjusting to life in a pandemic whilst being immunocompromised, the psychological impact of leukaemia during the pandemic is undoubtable. We have asked NHS England to regularly review their risk assessments and policies on visitation rights so that patients can have the support from loved ones where possible. In line with this, various efforts could be made to mitigate the risk e.g. by increasing testing capacity for visitors.
On the subject of vaccine efficacy, we have emphasised that further government guidance is required for the CEV in order that they can protect themselves as best they can. Our practical recommendations to the Government include keeping face-masks mandatory in public places and reintroducing priority shopping slots. In line with our #LifeVsLivelihood campaign, we’re also calling for more guidance for employers of the CEV and for the furlough scheme to be extended again for this group to prevent the risk of unfair redundancies.
Lastly, on the topic of the NHS England workforce we outlined how important it is for all patients to have access to a Clinical Nurse Specialist (CNS). Some patients had also experienced trying to get in touch with their healthcare team and failing to do so. 15% of you reported either trying to get in touch with no success or needing help but not getting in touch. Whilst this might not seem like a high proportion we believe further investigation is required to ensure that the workforce is sufficient in order to avoid any patients slipping through the gaps and to address reasons for patient reluctance. We also mentioned the deployment of NHS staff and resources and the impact this has had on the various aspects examined in this submission.
We know that many other patient organisations have submitted their evidence for this inquiry and we hope that by coming together we will have jointly covered most of the issues that blood cancer patients currently face.