Gemma joined Bloodwise as chief executive in September 2017. Prior to this she worked at King's College London and King's Health Partners as executive director of fundraising and supporter development.
A lot of the treatments that blood cancer patients receive such as chemotherapy or CAR-T therapy (a form of immunotherapy) are considered specialised. Once people are in the system, the feedback we get is that services work pretty well. One of the biggest challenges is how they get into that pathway in the first place.
Difficulties in accessing specialised services
The experience of blood cancer patients can be a little different to the experience of other cancer patients. There are over 100 different types of blood cancer. Blood cancer patients end up being seen in haematology clinics, not oncology clinics. That can mean they are less able to access some of the things available for other cancer patients and indeed patients with other conditions. A whole cohort of blood cancer patients are on 'watch and wait', where they've received a diagnosis but aren't getting any treatment. They have significant needs in terms of their mental health and wellbeing. We did a piece of research which found the variation across the country on access to psychosocial support for people with blood cancer is massive. 70% of men and 80% of women told us their diagnosis impacted upon their mental health, but over half received no specific emotional or psychological support from the NHS.
Using specialist providers to support prompt diagnosis
Blood cancer is the fifth most common cancer and yet it is one of the slowest to be diagnosed, so there's a real issue with referral into the right place at the right time for these patients. Around 30% of people have seen their GP three or more times before they get referred for a diagnosis. A lot of the symptoms of blood cancer could be many other things. Access to specialists for GPs can make a real difference. If GPs can access a consultant in haematology to really talk through what they're seeing, that might take out six months of patients bouncing around the system and being in the wrong place. Before you even get into the specialist system, there needs to be some way of the specialist reaching into the community to pull those diagnostics through.
The NHS long term plan proposes the roll out of new rapid diagnostic centres. The reach of these might make a difference for blood cancer patients getting into the right service. But the aspiration is to diagnose the majority of cancers in stage one or stage two and staging data in blood cancer isn’t at all effective. Staging data makes sense if you’ve got a solid tumour. In blood cancer, for all sorts of reasons, staging isn't a helpful measure in many cases and there sometimes isn't staging data at all.
Navigating a rapidly changing clinical environment
Blood cancer is an area where the science and treatment are incredibly fast moving. There are a smaller number of patients whose conditions are demanding what is close to personalised treatment – there's a sense that those treatments need to be commissioned nationally. As a charity we must then ask how do people afford the cost to travel there, how do they negotiate that longer period of absence from their work, and get the psychological support they need?
Nationally commissioned services have regional variation and the experience of someone in the south east or in an area where there's big research led capability tends to be very different from other parts of the country. One of the ways that tends to come up is in access to trials. There’s huge variation in whether patients will be offered trials or offered the trials that are the most appropriate for their condition. That varies around the country and it’s an area of real concern for us.
70% of men and 80% of women told us their diagnosis impacted upon their mental health, but over half received no specific emotional or psychological support from the NHS.
Because science in blood cancer is moving so quickly, the other challenge that we hear about a lot is that there's not one established treatment path – there are so many different choices that your commissioner is making for you. That can be overwhelming for cancer patients and they often feel that they have no agency in that decision making process. Perhaps the most distressing point is end of life, where there seems to be a high occurrence of blood cancer patients not feeling like they were given all the information about the likelihood of treatments working.
Ensuring patients have a voice in specialised services
In a blood cancer environment, partly because the patients can be so acute, and sometimes because there are just so many things you can keep trying, perhaps the patient voice isn't being heard as it should be. We're just starting a piece of work with Citizens UK to work with patients, clinicians and providers to see if there's a way we can improve how that's working for patients, because it's really distressing for families.
Patients often say to us they feel they need to be the experts in their treatment, because no one else is and because they are moving between lots of different bits of the system and they are the ones that need to be asking questions. This becomes further complicated where there is comorbidity, and patients are concerned about the interplay between different medications.
Patients tend to have a better experience when they have a clinical nurse specialist (CNS), and yet the cancer patient experience survey tells us that some blood cancer patients miss out on access to a CNS. We have a programme for educating and informing patients about how they can have conversations with their clinical leads, ask the right questions and feel confident in their agency in the system.
Some trusts are really good at involving patients in decisions about services, but when they are looking for cancer patients to involve, they go to the cancer centre or the oncology unit and often don't pick up blood cancer patients there. The experience of blood cancer patients can often be quite different, and we've seen an under-representation of these patients in established patient fora.
Patients often say to us they feel they need to be the experts in their treatment, because no one else is.
We have some examples of patients treated at organisations where they feel they have been really involved in discussions about their treatment, and also in the wider decisions of trusts about how they provide services. We work closely with NHS England to ensure that patients' voices are represented. There are some really good examples, but it isn't universal.
99% of patients would have no language to describe specialised care – it's just their health and their healthcare. The complexity of the system doesn't help patients to have agency – for instance, access to new treatments via the cancer drugs fund has been transformational for blood cancer patients. About a third of the treatments that have been approved are for blood cancer, so it's huge, but other than patient advocates who've got involved, I haven't met a patient who would understand that. The ongoing commitment to new and innovative treatment is really exciting and positive: having therapies like CAR-T right at the heart of the NHS, and recognising that being able to provide them is an important part of the NHS remaining loved and respected by the public.