Thursday, 21 January 2016

Dear GovNet Advisory Board, This is Groundhog Day, From a Patient.

Since this letter has been published, it has been brought to my attention that there were speakers who had long term health conditions. They were listed in their professional capacity with specific organisations to talk about their organisational experiences rather than from a patients' perspective. Although I can no longer say there were no people with long term conditions at the event, the sentiment of this letter, where the day to day on the ground experience of everyday people with long term conditions was lacking at the event still absolutely stands. I refer to David Gilbert's blog, "We are all patients. Yes and no." to explain this subtle but important difference.
From my perspective, the event still didn't have the opportunity to hear directly from people with long term conditions or carers about what matters to them, and that needs addressing. 
My apologies if I have mislead anyone. 

Dear Rt. Hon Lord Foulkes of Cumnock, Baroness Hilary Armstrong of Hill Top, Lord Archy Kirkwood of Kirkhope, Sir Robert Worcester KBE, DL, Lord Goodlad KCMG PC and Cheryl Gillian MP (GovNet Advisory Board),

As the Advisory Board for GovNet, I wanted to let you know about the Long Term Conditions 2016 conference that took place today that was run by GovNet.

Last year, the event also caught the attention of myself and other patient leaders on Twitter, and we commented vocally on Twitter that it was totally inappropriate for people with long term conditions to not be there. A last minute change was made to include a patient speaker.

But as the event for 2016 was covered on Twitter today, it was like Groundhog day, with no patients or carers who weren't there in a formal professional capacity listed as speakers in the plenary or breakout sessions. I have had no response from the @LTC2016 Twitter account, hence this open letter.

To have an event about long term conditions, without a significant presence of people with long term conditions there, is at best a waste of time and at worst a waste of lives, as systems continue to work around professionals and not with patients.

This is ethically and morally irresponsible and wrong.

If the aim of the conference as state below from the website is true, not having patients and carers there talking about what really matters means that aim can't be achieved. How can you help patients live healthily and independently if we aren't there to tell you how we already live and what would actually help us achieve that? How can you legitimately talk about having leading expert speakers with no speakers holding primarily the expertise of lived experience as non-professionals or non-corporates - now widely recognised as having parity of esteem with professional expertise. Patients and carers are the key stakeholders, of course.
How can something be prestigious without these essential components of a conversation about health?
...The Long Term Conditions Conference 2016 will explore the policies, strategies and best practice being employed to tackle long-term conditions and help patients live healthily and independently.
Access to leading expert speakers along with the opportunity to actively network with other sector leaders, decision makers and key stakeholders make this the most prestigious event of its kind. The one day format will provide everything you and your fellow delegates require to move forward under the direction of the current agenda and utilise the information delivered on the day...
I am not guilty of 'blue sky thinking' or 'wishful thinking' as patients and carers are already involved in conferences. The BMJ are championing this, building on the work of the PatientsIncluded.
NHS England have (to varying degrees) involved patients and carers in their high profile events for long term conditions, such as Future of Health (2013, 2014). The Kings Fund often involve patients in their events, as does the College of Medicine. By many, it is now considered standard in healthcare events to hear from people about what matters to them and their personal experiences of health conditions. There are plenty of people like Rosamund Snow, David Gilbert and Ceinwen Giles who have argued the rationale behind this far more articulately that I can, and I would encourage you to read their work.

There are no excuses left for not involving patients and carers and listening to lived experience in events in 2016.
“You can never make the same mistake twice because the second time you make it, it's not a mistake, it's a choice.”
Myself, my fellow patient leaders and the other 15 million people living with long term health conditions and our carers want to know why you have chosen, in 2016, to ignore half of the conversation about long term conditions.

Yours sincerely,

Anya de Iongh
Person living with long term conditions, Patient Leader


  1. Agree wholeheartedly. However, wouldn't the funding/resources used for Conferences be better used to more practical use ? Instead of talking about possible solutions to issues, lets tackle the actual issues directly.

    1. I agree. Lots of money wasted.Loads of long term conditions can be treated with appropriate prescribed exercise (not always drugs). There should be much more emphasis on streaming patients to physio and exercise classes/education. Physios already know how to help.

  2. Grrr just scanned the #LTC2016 tweets and see what you mean! I have stopped participating now in conferences and meetings that don't have a patients/public included policy and evidence of implementing it (so that excludes the 'we tried and it was too hard' brigade). This gives me more time to put energy and time into those that do.....however this doesn't challenge the status quo and you are right to call this out Anya.

  3. Ironic, when in Canada we have speakers like Simon Denegri and Neil Churchill coming to tell us how to "do" patient engagement effectively at conferences here. Also I have often heard mentions of the King's Fund as a model. I totally agree with your blog post.

  4. Dear Anya,
    I have arranged a conference for June 2016 for patient's and HCP's to learn more about their conditions.
    I wonder if you would consider sharing this link with your readers? I have three patients who will present as well as the 4 speakers
    It will address, B12 deficiency, methylation issues, CFS, Autism, pyroluria and thyroid. All long term conditions and many patients struggling to access correct treatment. I hope this is of interest to you. Best wishes Tracey

  5. Agree wholeheartedly. Professional talk about us becuse they have met us, but we need to speak for ourselves. You are so right. Keep shouting Anya and if you need I will shout too

  6. Agree wholeheartedly. Professional talk about us becuse they have met us, but we need to speak for ourselves. You are so right. Keep shouting Anya and if you need I will shout too