2022 is upon us, the days are getting longer and the crocuses are proudly anticipating the grand reveal of their colour and beauty over the coming weeks. It is impossible not to feel renewed hope and positivity in spite of oneself. And so hope we will – that we can continue to raise awareness of the medical model needed to provide the best and safest care for cancer patients in south east Wales.

Our continuing efforts in this area are not personal. Our criticism of the proposed model is not personal. Endeavours to encourage scrutiny of the nVCC project are not personal. We simply believe that there is a far better, safer, cheaper way to care for patients with co-located care and that the current proposals WILL fail to guarantee safety and joined-up thinking across multiple specialities.

‘Where are the Velindre Minutes then? A routine enquiry has thrown up major questions about the legitimacy of the new Velindre Cancer Centre being built away from a general hospital. A recent Freedom of Information response (13th January) signals that Velindre did not generate key documentation for this decision. In particular, the reply clearly can’t confirm that there are minutes or even agendas for the crucial clinical meetings behind the choice of site.

So when the FOI requested dates, agendas and minutes in September 2021, none proved forthcoming in the reply. Rather, it reported that no ‘separate outputs’ from the meetings existed, not even ‘notes’, so inevitably no minutes.

The purpose of this piece is not to educate any readers to buy into the professional values of doctors, or to enter into debate about specifics of professional behaviour. Rather it is to consider the behaviour of a group of doctors who have differing opinions on the future of cancer care and to remind us all of our duties of professional behaviour towards each other, and that this matters.  To this end we re-read a General Medical Council booklet entitled ‘Good medical practice: Professionalism in Action’ (henceforward shortened to GMP: PIA) and this blog will refer to this document frequently. 

Co-locate is back. Slightly late, we wish you all the good things you need for navigating life in 2022. We are still in the fray this year, and still on the side of best cancer care. Our previous post depended on events as they broke and got posted just too near Christmas to have full impact. But it really brought vital information found only here so visit it anyway and do take a look at the brief YouTube clips. We work on to see truth out in the open and wise decisions on the rise. A new blog follows shortly.

Co-locate Velindre

Can it really be that New Velindre devalues stakeholders and fellow professionals in cancer? We ask the question since a Velindre spokesperson has apparently devalued the following:

1: The 7 members of the External Advisory Board (EAB)

This body monitors the Wales Cancer Research Centre (WCRC). All its panel members are NHS professors with international reputations in cancer. It is the eminent panel of doctors that assures standards for cancer research in the whole of Wales.
See the Board’s letter at:
https://colocate-velindre.co.uk/eminent-clinical-reviewers-on-velindres-plans/
The letter warns that the New Velindre ‘stand-alone’ cancer centre is against patients’ interests. The current plan will damage Velindre’s recruitment, research, brand and reputation.

2: The 163 senior clinicians specialising in all aspects of cancer throughout S E Wales, their names known to successive Health Ministers.
See their letter at:
https://colocate-velindre.co.uk/letter-from-163-clinicians/

3: An award-winning NHS cancer centre critical for north Wales patients.

The New Velindre attitude on all three surfaced in October with a video clip showing its spokesperson publicly replying to questions.
See this and other brief clips at:
https://www.youtube.com/channel/UCsKXkeYLS68savA_m5nzi9g

What’s more disconcerting than misinformation?

Especially misinformation about major medical issues as serious as cancer.

A constituent recently emailed Senedd MS Julie Morgan calling for an independent external clinical review of New Velindre’s stand-alone model before the proposed building works go forward. This was her reply, received by email on 3rd December, 2021:

‘The Nuffield Report was quite clear that the build should go ahead.’

This is very serious misinformation. It illustrates why we should always look twice at claims to be following the Nuffield advice. For Nuffield made no such recommendation.

What the Nuffield advice rather said was that ….

‘….we are not making any judgement about the decision to site the new VCC on the Northern Meadows. Such a large scale option appraisal exercise is not only well beyond our terms of reference but is fundamentally about values and the choices that need to be assessed and taken by all involved.’ https://www.nuffieldtrust.org.uk/project/independent-advice-to-velindre-nhs-university-trust pg 11.

‘Staff are being given a whitewashed version of the process with absolutely no information to allow them to provide critical clinical feedback on the project. Velindre are being in no way transparent with their own staff, many of whom totally lack a basic understanding of the realities of this centres proposed service provision as a result.‘ (respondent 6)

Regular readers will know that we’ve been running a survey asking people about their awareness of the New Velindre plans, and what they think of them. The survey is still open, and can be found here: https://www.surveymonkey.com/r/Q6TM7FR

What have we learned so far?

We knew when we started it that the survey was not going to give us statistically accurate results. People answering it are likely to have been interested on the subject (one way or another) already. Also, we don’t know what proportion of people who looked at it chose not to answer. So we’re not going to be saying ‘95% of respondents agreed…’ for example.

We can say, though, that we received many more responses than we’d expected, much more quickly than we’d expected. Not everyone who responded agreed with our views, but the vast majority were polite in the way they disagreed.

Many of the people responding are Health Care Professionals, and many of them currently work, or have worked at Velindre. We’ve no way of identifying any individuals.

Two key themes emerged: concerns for staff and patient safety with the stand-alone model, and the lack of consultation by Velindre with their own Staff and more widely.

We’ve already highlighted some comments on Twitter (@colvelindre) You can find out more about what Health Care Professionals think of the plans below:

On a recent visit to the Northern Meadows Iolo spoke about how a cancer centre cannot any longer be built away from a main hospital, rather they should be “side by side.”

Iolo said that although he has been a massive supporter of Velindre, for example walking up Kilimanjaro to help them, he is now asking Velindre to think again and find a more suitable site so that the new cancer centre is not set apart from a main hospital.

Here is a short video of Iolo at the Northern Meadows.

Independent Review?

Regular readers of these blogs will know that we have repeatedly called for an independent clinical  review of the stand-alone model for the new Velindre Cancer Centre. 

As an example, we’ve described the process undertaken in the independent review of the Mount Vernon Cancer in this blog: https://colocate-velindre.co.uk/jaguar-electric-vs-rickshaw/.

Many people think that the Nuffield Trust carried out an independent review of the model in late 2020, so therefore all is well.  Velindre and Welsh Government are very happy for people to believe this, but sadly it isn’t true.

 The Nuffield published advice to Velindre on 1.12.20. It can be found here: https://www.nuffieldtrust.org.uk/files/1606833630_advice-on-cancer-services-in-se-wales-velindre.pdf)

We’ve touched on the Nuffield advice briefly in a previous blog https://colocate-velindre.co.uk/what-about-the-nuffield-trust-advice/. This blog looks further at the Nuffield advice, what it covers and what it doesn’t.  You can read a more detailed synopsis of the entire report here: https://colocate-velindre.co.uk/nuffield-synopsis/

What’s all this about?

A simple comparison reveals a shocking contrast between the New Velindre Project and the parallel Mount Vernon one, at Northwood, Middlesex [updated October 2022]. Very similar challenges in the two cases, but utterly opposite responses. This blog is only a taster for the full, shocking contrast between the two. You can read a more detailed comparison (‘Which way was Wrong’) here https://colocate-velindre.co.uk/which-way-was-wrong/.

So what’s at the heart of it?

‘Which Way was Wrong‘ reveals the New Velindre team autonomously deciding in 2014 to eliminate the prevalent model for new cancer centres: co-location with an acute hospital, from their thinking. Moreover, in contrast to Mount Vernon, Velindre’s documents show no evidence of peer consultation with partners and stakeholders before this far-reaching decision.

What happened in the two settings before the full options appraisal?

Mount Vernon, before making any decision affecting options, underwent an extensive independent external review. The review included interviewees well beyond Mount Vernon’s own staff (see ‘Which Way was Wrong‘ for detail).

Velindre doesn’t even make mention of such formal independent consultation before getting down to impacting the options.

The following highlights how an extremely common scenario unfolds in a stand-alone centre versus a co-located site. The hypothetical patients could be any of us or our loved ones. The details used are fictitious but standard and will be only too familiar to every medical professional who reads this

Patient S

Patient S is currently attending an oncology clinic in a stand-alone cancer centre. She is 52, a librarian and lifelong smoker who enjoys walking her dog. She is going to be admitted for the management of pain and feeding problems following her radiotherapy for laryngeal cancer.

S’s husband has been trying to feed her soup and mashed potato to keep her energy up but notices that she has been coughing when she eats. The team explain that she may have been inhaling some of the food because of her abnormal swallow. 

S’s prognosis is excellent and her treatment should be curative.  She currently can’t cope at home because she struggles to swallow her pain killers. She is becoming dehydrated and is in severe pain. Her team have decided that she should have a tube placed for nasogastric feeding and pain relief with supportive nursing for a few days whilst they regain control of her symptoms. S is admitted to a stand-alone cancer centre, about three miles from the nearest acute hospital.

Several hours later

S is much more comfortable. She has a nasogastric tube in place so she can be fed and receive pain killers. Unfortunately, later that night, S starts to develop temperatures and a cough. The nurses notice she is becoming confused and sounds breathless. A chest x-ray shows pneumonia with the nasogastric tube in the correct location.

It’s fun, it’s easy to fill in, and it seems to be pretty popular. We’re keeping it open for a while longer so there’s still time to complete it if you haven’t already. it usually takes less than two minutes, so why not give it a go!

Here at co-locate Velindre we are keen to hear your thoughts and views. on the location and structure of cancer services in South East Wales. 

To make this easier, we’ve devised a quick survey which is completely anonymous. 

The survey is for anybody, not just those who agree with us, although we would ask for civility in responses. 

you can find the survey here:

 https://www.surveymonkey.com/r/Q6TM7FR

Thanks for all your feedback!

Edit

Many people know that senior cancer clinicians wrote twice to Welsh Government about the plans for the new Velindre Cancer Centre. They asked for an independent clinical review.

https://colocate-velindre.co.uk/clinical-letter-to-ministers-7/

Those clinicians (57 signed the first letter, 163 the second) worked in the Health Boards whose patients travel to Velindre for radiotherapy and chemotherapy.

Velindre clinicians also wrote

There are other, less well known letters. This time from clinicians in Velindre themselves, spelling out their concerns about the Velindre plans. Again, asking for an independent external review. They wrote to Welsh Government Ministers and Officials, as well as their own Chief Executive and Medical Director. You can read the letters in full on Welsh Government’s own website: https://gov.wales/sites/default/files/publications/2020-12/atisn14500doc2.pdf