With reference to John Mills's article in the AGM magazine regarding how poor Wales NHS actually were in treating Vasculitis patients and signs of progress with the Welsh Assembly involvement on the issue. By default, the issues raised by John, may be common to other rare deceases and other NHS areas.
I approached Gary Doherty the CEO of Betsi Cadwaladrl (who are still in Government Special Measures), in May of this year following a 10mth journey with my wife, who has HSP with possible Nephrology. This is in North Wales, UK.
My "offer" was to use my business background to help their organisation review their Vasculitis Protocols, Processes, Pathways & Risk Management covering Hospital (Bangor), GP practice and Laboratory (tests) interface. I would like this to include IT systems, administration (case notes, Consultant/GP letters & referrals & test results) and most importantly the Culture of their organisation.
Further to what I will call "a helpful but political response", I escalated my "offer" to progress the matter further and they have now designated it a complaint. They feel they can deal with the issues more effectively if their process treats it as such.
They have agreed to appoint their Senior Concerns Team representative for this geographic area. This team processes & manages complex incidents & complaints, it has links to Health Inspectorate Wales, is an experienced Governance team & amongst other things covers Alerts, Policy & NICE. The idea is to review lessons learnt and identify outputs. They are willing to link results with existing initiatives in progress already.
Essentially, this hopefully, is a full investigation of one patients Vasculitis journey in North Wales. This may well therefore pick up generic issues regarding all rare deceases and other medical conditions.
In order to gain momentum, I have sought the help and advice of our Local AM/MP and have a meeting planned to review whether and how help on this matter can be offered.
Other than information the purpose of this post is :-
- would anybody else be prepared to share their North Wales Vasculitis journey if this was needed/allowed?
- are there any people who have process review, governance & risk management skills experience interested in helping map out the journey issues and undertake analysis?
- I recollect a patient who was looking to do a thesis, so anybody who is wanting to follow this review who can help with written summaries and actions.
- I have liaised with John M and will continue to do so. We can hopefully involve his teams expertise as the need arises, as there will be times when my Vasculitis knowledge may miss opportunities.
- to seek any ideas to how best progress this and views on whether any other organisations would benefit from involvement (if allowed) and/or outputs?
I imagine this review may take several months and I wish to ensure we attempt to get the maximum out of Betsi Cadwalada involvement and co-operation.
I would be willing make similar approaches to other Health organisations in due course or liaise with others who are willing to do so.
Please private message me with any specific points.
Thank you, John T