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.
‘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.
Take a look at this video describing the colocated cancer centre at Guy’s Hospital in London.
The planners at Guy’s recognised that patients were receiving their care from many different locations over two sites, ‘and it was exhausting’.
New Velindre Leadership say that there’s just no room to build a colocated centre on the UHW site. They say the build in Whitchurch will provide a better patient experience, despite the risks and stress of patient transfers.
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.
A simple comparison reveals a shocking contrast between the New Velindre Project and the parallel Mount Vernon one, at Northwood, Middlesex. Very similar challenges, but utterly opposite responses. This blog is only a taster for the full, shocking contrast between the two. You can read a ore 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 2015 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).
Velindredoesn’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 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.
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
This conversation is fictitious. But free of alternative facts.
‘North Cardiff doesn’t know it. Cancer patients don’t know it. Many cancer clinicians throughout Wales don’t know it. Even you, a rookie reporter, don’t know it. ‘
‘Uh? Know what’?
‘How the New Velindre Cancer Centre became destined for the wrong location. We should run the story at the weekend. People just don’t know that the Minister of Health, around 2015, instructed the Velindre Board to build its new Cancer Centre on a ‘stand-alone’ site. You know, not at a big hospital (1).’
‘So who exactly did that, and do they-‘
‘He’s First Minister now. He’s the one who did it. That’s where it all started.’
Two patients a week from only forty beds and one junior doctor on the premises out of hours.
But there are many other transfers every week between Velindre and larger hospitals. Some are patients from Velindre needing investigations that are available as a matter of course in Cancer Centres colocated with acute hospitals. Others carry patients with cancer who are too sick to be looked after in Velindre from their acute hospital beds to Velindre for radiotherapy.
Anyone who has travelled by ambulance will recognise the discomfort, anxiety and fatigue that result. These transfers would be unnecessary if Velindre was co-located on an acute hospital site.
Today the opposition showed its true colours with a declaration of intent to start work to development of the New Velindre. This despite their many failures: to get planning permission, to discuss their work with local residents, to await the formal legal position with the Judicial Review not being heard until next month and finally, their failure to discuss the issues we have raised on this website in any way, shape or form.
Local residents managed to raise tangible objections to the planned works presented so shoddily and inaccurately. They put off the contractors from carrying out their intended works on the day, and raised public consciousness about the aim of getting New Velindre leadership to consider colocation.
The ITV news coverage included coherent factual interviews with some protesters who clearly have a proper understanding of the medical issues, along with the environmental concerns that also have.
We’ve reproduced this comparison chart kindly provided by the Save the Northern Meadows Campaign to demonstrate again the folly that the New Velindre Cancer Centre will be.