Wednesday, 4 February 2015

on being deleted by the Public Involvement Officer (HIS) of the Scottish Medicines Consortium

VOX Scotland, the national mental health service user led organisation advertised in their most recent E-bulletin the forthcoming conference of the Scottish Medicines Consortium (SMC) on 24 March 2015:

And so, on 30 January, I went through the hyperlink to the SMC website which had this information:

"The Scottish Medicines Consortium (SMC) is holding a conference to engage the voluntary sector in its work.  The event, which takes place on Tuesday 24 March, will see delegates hear from a range of speakers from SMC, voluntary sector and the Scottish Government, covering topics including recent changes at SMC, how organisations can engage in the process to ensure that the patient and carer voice is heard and the view from the Scottish Government. There will also be a number of workshops which will focus on issues including methods and techniques for gathering information about the patient and carer experience and understanding the SMC decision making processes. 

This event, which will be held at the Teacher Building, 14 St Enoch Square, Glasgow, is aimed at all patient/carer groups and voluntary sector organisations who are interested in being involved in the appraisal of new medicines in Scotland. This includes both those who have sent in submissions to SMC in the past and those who have never taken part but are interested in the SMC appraisal process for new medicines. There is no charge to attend this event.

There will also be a number of workshops for delegates to attend."

[I'm a member of the Health and Social Care Alliance, and had been invited on 7 February 2014 to speak at their event ''A Question of Ethics: Members discussion on the ALLIANCE's relationship with the pharmaceutical industry'.  I was unable to attend due to being unwell, however I wrote a piece which was distributed at the event: "I believe that taking money from Big Pharma is ethically wrong".]

I thought the Scottish Medicines Consortium event would be useful for me to attend, particularly since I have been supporting the work of Dr Peter Gordon in his Sunshine Act for Scotland Petition that has been going through Scottish Parliament.

Therefore I ticked on the link to the Eventbrite registration process and booked a place at the SMC conference.  Put the date in my diary and was looking forward to hearing about the "SMC appraisal process for new drugs"

However out of the blue I received an Email on 2 February from the SMC Public Involvement Officer, James Stewart (HEALTHCARE IMPROVEMENT SCOTLAND - SD039) saying:

"Dear Chrys, 

Thank you for your interest in our upcoming event on 24 March.  This event is aimed solely at voluntary sector organisations which are either registered charities or voluntary organisations which are constituted and therefore eligible to make a Patient Group submission to SMC. The main purpose of the event is to provide information and support which will help patient groups who are submitting to SMC.  All attendees at the event have be there as representatives from a charity or voluntary organisation due to the aim of the event and the limited places we have available.  I noted from the details that you have put down on the sign up form that you have not put down a specific charity or voluntary organisation that you are there to represent.  Therefore, if you are attending to represent a voluntary organisation could you please give me the details of the organisation and your role/job title, so that I can amend this on the form.  If you are not there to represent a specific organisation, then unfortunately I will need to cancel your place at the event. 

If you have any questions about any of this, please get in touch."

I did get in touch, over a few Emails, saying I was an Alliance member, had run a voluntary sector organisation Peer Support Fife but had to stop due to caring duties and funding stopping.   I did ask if I was the only person being moderated in this way.  It felt discriminatory.  

I explained that it had said on the SMC website that the event was for "those who have never taken part but are interested in the SMC appraisal process for new medicines".   That was me.  I copied in both Ian Welsh, CEO, and Irene Oldfather, Director, of the Alliance, to the Emails.

However it appears that my name has been deleted from the database of delegates.  Excluded yet again by another Healthcare Improvement Scotland Officer.  From a key event where my questioning voice could have been captured, and brought a bit of balance and insight, from the carer and psychiatric survivor perspective. 

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