Vasculitis UK
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Waiting times help


I posted the other day but have been unwell for 2 years, diagnosed with a PE a year ago but have still been unwell and was told that the clot hadn't dissolved and being referred to Papworth regarding surgery they discovered I have an inflamed aorta and pulmonary arteries and suspected vasculitis which was confirmed by a PET scan. I was then referred to Addenbrookes on the 15th March.

I saw a respiratory consultant who is part of the vasculitis team on 15th of April but the appointment was disappointing. He did not have the pictures from my PET scan and said I would see ENT in 2-4 weeks and him again in 6 weeks to discuss treatment. I was upset that I would have to wait another 6 weeks for any treatment.

However, when I received the appointment letter the appointment is infact 8 weeks away. I have called the respiratory clinic at Addenbrookes today who have said they are really busy and do not have any earlier appointments. When I asked about the ENT appointment they said the referral letter had not yet been written and they had a typing backlog. When I spoke to the ENT department they said when they receive the referral it takes them 5 days to send a letter out to me and I then have to then ring to make an appointment and they also have a shortage of appointments. In this case, I am therefore also doubtful that the ENT appointment will take place in 2-4 weeks.

I have contacted PALS at Addenbrookes who said they will raise concerns but got the impression this wouldn't change things.

How long have people had to wait for treatment and am I being unreasonable in thinking that another 8 weeks wait is unsatisfactory?!


7 Replies

I'm REALLY glad you have brought this up Littledot3.

I am extremely frustrated by the waiting times for treatments I need (requested by my consultants), for issues relating to my CSS. Indeed some of my most basic "maintenance" treatment depends on prompt action by other medical departments and healthcare professionals.

I find I constantly have to chivvy along hosp' departments, Dr's surgeries/appointment and medical dept's etc just to get a basic level of care and to avoid a complete breakdown of my treatment plan.

I am certain that without my constant vigilance and intervention I would be up the proverbial **** creek without a paddle. I have even had to pay privately for treatment that the NHS was incapable of providing within the timescale needed for my treatment (in fact I'm still having to do this for a recent request for me to have an MRI scan).

I could write a, very long, book on this subject. :-(

So, you are not alone Littledot3. Unfortunately nearly everyone I speak to with Vasculitis has these issues too.


BerkshireBird, I'm not 100% sure of my ground here but I believe that if the NHS is not able to provide the care/treatment required within their own scheduled timescales and you are forced to go private, you can claim some of the cost back. Or at least bring the failure to meet targets to the authority's attention, at which point there's a chance they might snap into action to avoid censure.


It didnt happen under the previous government did it.

I guess it must be this present governments comittment to make the NHS better then


I don't know where you go for your treatment BB, but Addenbrookes vasculitis clinic is under great pressure because people get sent there from all over the UK. We need more vasculitis centres of the calibre of Addenbrookes. Birmingham QE and some of the London Hospitals are very good.

Of course, if you are able to attend at the drop of a hat, you could try asking the resp clinic to let you know if they have a late cancellation.



no you are not you want treatment and I can understand that am you on any think at moment


I dont know about Addenbrookes, but when I was ill up North in Salford and ready to come back home, my Neurologist looked for an expert for my Cerebral Vasculitis and recommended either Bristol or Southampton, I chose the latter as it was closer. After an appalling time at my local hospital, I can't praise Southampton enough.

I always get clinic letters as does my GP and there is excellent communication between them both. I always have a follow up appointment booked so dont have to worry about that.

In fact after waiting desperately for an appointment at the eye clinic in Southampton, I even had them calling me several times to try and sort it out. and now have an appointment very soon! know full well that not all hospitals are good and have an expertise in Vasculitis so Littledot I do have sympathy for you?

I just wanted to actually praise another hospital apart from Addenbrokes for excellent treatment that I have had and continue to receive?


No, I don't attend Addenbrookes hospital. I have to use two different hospitals (located in the SE of England) due to the issues I have and the specialist help I need.

I wholeheartedly agree we need more specialist vasculitis centres but how realistic is that? If and until that happens, things will probably stay the same. Sorry to sound so negative but that's my view.

Thank you all for your suggestions.


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