VASCULITIS MANAGEMENT

[Yeprat]

Hello,

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

[charlieab]

Hi John

Sorry to hear that your wife had such a long and difficult journey in getting diagnosed. I hope that she is doing OK atm. The work you are talking about sounds like it could be very useful for the trust in question and for other trusts, and of course for their patients.

I have had a two year diagnosis journey from hell in West wales. For example, I saw one GP who told me that (what turned out to be) livedo reticularis on my legs and arms was just the result of the hot weather and the next GP I saw said it was the result of the cold weather. When I asked for a referal to a rheumatoligist, I was told that it would take over a year and so I had to go private. I have recently been diagnosed with two autoimmune conditions and the possibility of vasculitis or Anti-phospholipid syndrome are being looked at as posibilities explaining the so far unexplained symptoms. In the meantime, I have gone from having had almost no physical health problems in my life to having little left that seems to be in working order!

When I became ill I had been about to finish a phd in employment and equality law but had to give up/ maybe postpone that as the symptoms made it difficult to work, including for example blurred double vision and loud multi-tone tinnitis, not to mention brain fog that leaves me wondering what I was talking about a second ago. There does appear to be quite a bit of CNS involvement in my case.

Anyways, Im trying to get back to some work and so am writing a report about the diganosis process, partly drawing on my own experience but also on qualitative interviews. Though I have to await ethical approval from the uni research ethics committee before I can start data collection.

Seems that there might be some cross over in what we are doing and that maybe I could help out a little bit with what you are doing. The caveat is that the collapse in my physical health (along with divorce, loosing my home etc) has led me to suffer depression for teh first time in my life and Im not in the best of ways atm. Also I seem to have picked up some cognitive impairment and so am a fair bit slower than in the past.

But I would like to help out when Im feeling a bit more together, if you think that I could help in some way. Before getting too ill, I had a few law journal articles published last year, looking at national and international disability equality law, and its impact on practice, and this might be of some relevance I guess.

best wishes

[Tbrz in reply to charlieab]

Hi,

Your story sounded a bit like mine. It took 2 years to diagnose me, they kept giving me antibiotics for my sinuses! I was even in hospital coughing up blood and they discharged me!

I was in the middle of doing a masters degree and could not understand why I could not think properly to write. In the end they kicked me off the degree as I could not finish my dissertation. I lost out on a good promotion because I was ill. Although I am now stable, although not quite in remission, I too have been left with severe tinnitus, so bad I feel my head is vibrating. I also have blurred vision and brain fog. My hands shake really badly, so it is very difficult to write. I have gone from being fit and healthy to someone I barely recognise; the large dose steroids have blown me up like a balloon and has now given me diabetes, so another thing to deal with. I know it is a difficult disease to deal with but I was ignored and my symptoms were not taken seriously at all; if they had, the damage to my body would not be as bad. I think it is very sad people have to go through this trauma and loss, just because of ignorance.

Anyway good luck and best wishes to you.

[charlieab in reply to Tbrz]

Thanks for your message tbrz. Sorry to hear about what youve been through. It does sound similar. I spoke to a friend on the phone last week, someone I handnt spoken to in awhile. And I asked her if I seemd the same. She can be quite honest/ brutal and so maybe asking that was a mistake! Anyways, she said "yes, but you're not funny anymore". She use to say I was the funniest person she knew. Its like illness has even stolen my sense of humour, not satsified with my hearing vision and strength. But Im determiend to make some jokes next time we chat!

Any chnace of contacting the uni and explaining that the problems turned out to be vasculitis and asking them if you could complete the Masters with more time? Or maybe its not really possible now? Part of me thinks that I can complete my phd and a bigger part thinks that its a dream that I now need to just give up on. Who knows.

Have you tried one of the masking boxes from (I think) Hearing Concern for the tinnitus? It plays range of soundss like rainforest, sound of a river etc. My tinnitus is now too loud to mask. I can even hear it over the car engine. But I find that nature sounds at least take the edge of it a bit.

Sorry to hear about the diabetes. It does seem to be with chronic illness that one thing leads to another and its particularly upsetting when the medication for one thing contributes to another.

I hope things get better for you soon.

Best wishes

[Tbrz in reply to charlieab]

Hi Charlieab,

Thank you for your reply. Unfortunately the University were not very helpful, happy to take my money, but not so much allowing me more time. I tried to fight it but I was too ill and as I keep finding out with Wegeners you have to let your old life go and accept your new reality, as hard as that is. I don't know if I will ever be able to pick that up, I love reading and I find that so difficult to do, I am learning, slowly, to stop punishing myself at what I can't do and feel good at things I am able to, however small - it's hard to accept and as someone who was always racing around m, working, ferrying kids around, looking after the family it has been horrible.

Regards the tinnitus, mine too is incredibly loud it even wakes me. Unfortunately I was under ENT dept, who treated absymally and I have a real issue, almost feel panicked to go back there, however, I also find nature soothing and have become a bit of a bird watcher, albeit from my garden, but it's about pleasures in small things - another thing I am learning.

Anyway thank you for your reply it is a comfort to see other people's experiences.

Best wishes

[charlieab in reply to Tbrz]

Hi Tbrz

Im sorry that things didnt work out with the Masters. But, yeah, accepting the new reality is part of getting on with life I guess. Though Im struggling with the acceptance atm. Maybe you will be able to pick up the Masters at some stage. I think the brain can adapt in time to changes. Making new circuits and that kind of thing. Maybe can ask for reasonable adjustments if you go to do a Masters.

ENTs can be useless when it comes to the E part. And yeah birdwatching sounds like a great thing to do. I use to like to cut down brambles in the wood and was amazed that if I was there for more than an hour then birds would get use to me and pirch pretty close or hop about just behind me. I suspect that I was stirring up the worms. That was the attraction, not my company!

anyway, hope things go well for u.

best wishes

[Tbrz in reply to charlieab]

Hi Charlieab,

I am sorry (fog brain) I didn't fully take in all the crap you have had to deal with, it takes a lot this disease as if your body, mind etc., wasn't enough. I am sorry for everything you have been through as well and no I won't offer meaningless inspirational statements, because they mean nothing - basically a crap thing has happened to us all something which changed lives and it's hard dealing with it accepting it, but the human spirit somehow drags us through. Anyway if you don't mind me asking what is your PhD on? My masters was in medieval studies. Best wishes to you.

[charlieab in reply to Tbrz]

Thanks. You are right about the human spirit, though sometimes feels like even the spirit is pretty exhausted.

Medieval studiies sounds great. I did history for my first degree, though did more sitting in the park and going to parties. I know its not mdieval history, but I like the cadfael books. In fact, it may not even be medieval?!

My phd was in employent and equality law and practice, focussung on reasoanble adjustments for disabled workers. Funny thing is that I didnt have a disability when I started; now I have a collection. Though not that funny I guess.

Anyway, best wishes. And thanks for all you kind words.

R

[Johnbrooks1973 in reply to charlieab]

Hi I've not been dx with vasculitis but everything is pointing to it. I've had tinitus for 15 yrs that coincided with the start of my arthritis. I now have arthritis in both hips right knee and it's started in both shoulders now. I've been in so much pain over the last two years and I'm still waiting to see a rheumatologist next Thursday. I hope they can finally get to the bottom of this and dx me. I've had blurred vision as well but it's corrected it's self apart from light sensitivity

[wendy1234 in reply to charlieab]

I read your post with interest. You mention some changes in your personal life. This is known to cause problems with auto immune diseases like many other ailments and could possibly be impacting on you in a major way. I'm interested especially from a food study aspect as diet plays a very big part and I feel this isn't being recognised much with auto immune blood problems. People half the time don't understand what they are let alone anything else. Sorry to here of your difficulties

[charlieab]

Hi John

Thanks for message. I dont seem to be able to send PMs atm. I think I need to verify my email but I cant get an email from HU so as to do that.

Will keep trying and reply if and when I suceed.

cheers

[Johnbrooks1973]

Hi everyone I've not been dx with vasculitis but everything is pointing to it. Seeing a rheumatologist next Thursday has anyone with GPA or MPA developed arthritis? I think I've had limited Gpa for over 13 yrs and that's when I got tinitus and the start of knee arthritis. I now have right knee both hips and shoulders with it.

[charlieab in reply to Johnbrooks1973]

Hi John

Sorry that you are having a hard time atm. I dont know yet if I have vasculitis and atm looks more likelty that I have APS or scleroderma from the tests that are being done. So I cant really offer any advice.

But might be worth reposting your post in s separate thread, as its a bit hidden away here.

best wishes

[Johnbrooks1973 in reply to charlieab]

Hi Charlie what is APS?

[charlieab in reply to Johnbrooks1973]

Hi John

anti-phospholipid syndrome. aka hughes syndrome. there is a support community on Health Unlocked.

[Johnbrooks1973 in reply to charlieab]

Well I hope you get back on track.👍

[wendy1234]

I've just read your interesting post. I have been pestering for years about services in North Wales. I've spoken to several welsh assembly AM's MP's doctors, consultants, and made a formal complaint to the nhs trust myself. As well as this I raised concerns with Rare Diseases Uk meeting in Cardiff. I also visited the circulation foundation in london some years ago when i found there was no support. This was prior to Vasculitis UK being founded.

My complaint to the trust in relation to my GP practice came back saying they had done everything they could. However, specialist funding to see consultants in England like many other health issues needs to be approved by the welsh assembly. If the doctor makes a case it is often refused due to not being essential or deemed life threatening. If you are serious enough to be put into hospital you might get referred quicker. The main issue with hsp is lack of knowledge and ongoing long term monitoring was not deemed essential until the last 6years or so.

Therefore their is little documented on long term affects. It is now found many who suffer from hsp also suffer from another auto immune disease or related health problem. Many also develop long term kidney disease. I'd be happy to meet up with you during September sometime in the hope we can thrash out some of these issues and perhaps come up with a action plan for the future. I've a range of relevant skills like yourself including management, leadership, systems audit, tna, admin, etc so I reckon we could work well together in at least rattling a few drums in forgotten it seems North Wales

[Yeprat]

Update on my post on Vasculitis Management in North Wales.

Firstly, thank you for those who replied to my first post by post or message.

I have now had a productive meeting with Liz Saville Roberts our MP and AM. This ended with an offer to help further which I shall pursue after the next round of meetings with the health authority.

I have also kept Genetic Alliance in the loop and agreed to provide them with much needed data flows and facts supporting the journey of a Vasculitis patient.

The correspondence with the CEO of Betws Cadwaladr (Regional Health covering all main N Wales hospitals) lead to a meeting with the Concerns team covering Bangor Hospital. This was very productive. We discussed a methodology for risk rating every stage of the process that one Vasculitis patient experienced, covering Hospital, Referrals (Wales & UK), GP, Laboratory & Results. At this early stage, this was in the form of a pass or fail rating/culture rank-score & timeliness at each point of contact. This exercise may well pick up numerous common issues that affect every Vasculitis patient and patients with other rare deceases.

This approach has now been reviewed with the Ysbyty Gwynedd (Bangor Hospital) Medical Director and they are considering appointing a Consultant to work with me, to take the process review to the next stage. One option being discussed is to use the newly introduced "hospital learning events" to make a a joint presentation to a large number of Clinicians (including Primary Care) sometime next year (my timetable not theirs). Discussions on the range of outcomes from this approach are continuing.

We also discussed the "Vasculitis Centre Model" as practiced successfully at several UK hospitals in England and supporting patient forums. Whilst low patient numbers in North Wales may affect this model, discussions embraced the principle and other ideas such as promoting a "lead Vasculitis Consultant (probably a Rheumatologist).

It is the beginning of a journey that may or may not lead to fundamental change. It is fair to say that the visibility of Vasculitis in Ysbyty Gwynedd has increased significantly amongst a cadre of involved personnel. We aim to take this positive further.

We are presently searching for data on the numbers of Vasculitis patients in Wales by region, as a baseline for options going forward. The NHS are looking into this but if anybody is aware of any other reliable sources that I can access (VUK?) please advise?

Res, JT.