Sarcoidosis - not enough care and attention given to sufferers

Thanks Morag, I was seeing the Respiratory people but once I got to stage 4 Sarcoid ie, Lungs fibrosis pleurisy bronchitis, joints, skin etc etc they just said " WELL I'M JUST GOING TO DISCHARGE YOU FROM THE CLINIC AS wE ARE NOT DOING ANYTHING FOR YOU. I was so upset. I was sitting there with pleurisy and he did not even examine me. Once you get older and in my case have more symptoms, the medics at my hospital just don't seem to care. That's twice I felt really humiliated so I don't feel I can ask to be sent back again, hence why I thought about a private consultant. I was re- referred in January , sinuses, erythemia nodosum, etc and he did tell me he would get my GP to prescribe medications for that but I got nothing when I went to my GP I feel I have no where to turn, so I will investigate the private route I think. I have been a nurse for 45 years and am still working, I feel so let down by the NHS ingeneral. Thanks for the message though Morag, I appreciate the advice Helen

Thanks Gustov, I hope that they can give you a definite answer, it means a lot to know that your Dr is pro-active on your behalf. Ii think I also have it in my Kidney system as I have been having problems for about 6 years ther but the Dr has not even considered that possibility. The best consultant I had moved away to another area.

My main site of sarcoidosis is the kidneys so it definitely can affect them. Its quite rare apparently, like that makes you feel so much better when the consultant tells you. That was when I was given steroids which definitely helped. Now off them but with regular blood tests to monitor for it starting to affect them again. 

If the respiratory consultant is no good is it worth you asking to be referred to another area, like Gustav having referrals to gastro? If you've been having kidney problems for 6 years you'd be well within your rights to see someone in a renal department. 

I totally agree with you Gustav. I was just thinking how difficult things can be with so few sarcoidosis knowledgeable doctors out there. I want to go back down to England as I am so miserable living in Glasgow but I have such a super respiratory specialist who is so well clued up on sarcoidosis that it is the only thing keeping me here. Having read so many horror storys and bad medical care I am honestly loathe to leave here for that reason. Also, having been told that I will have sacoidosis for the rest of my life it is looking like I may be stuck here as heath is so vital. I don't want to move and find that no one knows enough about sarcoidosis to treat me properly. My daughter suggested that I ask him if he will still treat me if I go down south and that I could travel back to attend appointments now that I am only attending him every 2 - 3 months. I'm doubtful he would be allowed to do that but there is no harm in asking I guess.

I hope another supportive GP joins the practise soon for you so that you will have someone to turn to. I think the newer doctors seem to be more aware of Sarcoidosis but then I suppose it relies on whether their interests in medicine is in auto-immune disease because if not then they are probably only going to gloss over it like so many other illnesses they are studying.

June x

Yes June, as you well know I was put through 10 weeks of Tb medication which caused me no end of problems.

I had been to Egypt in the November so of course they went down that route of tropical diseases, albeit that I had already had a chest xray the previuos month due to my symptons already being present.

But as you say they insist on investiagting the other diseases and leave Sarcodosis until last.....so that in itself is wasting money.

They were going to treat me for TB despite saying 'we don't think it's TB' but my husband was having none of it (I was still recovering from a bronchoscopy and was very confused).  I understand that TB is prevalent where I live in central London and that adult immunisation rarely works (and our childhood vaccinations may have 'worn' out) so yes I could have TB *BUT* if you don't think someone has TB why on earth treat them for it?  And then they wonder why we're building up a resistance to antibiotics....  Thankfully that was my one and only consultation with that particular doctor.

Hi, if I had realised at the time I would of also been firmer, but I had a call the day before I was due to go to the respiratory clinic asking me to attend the infectuos disease clinic beforehand...I was stunned.

This was following my bronchoscopy...albiet they were growing with no developement of TB.

I actually live in London, what hospitals are you under.

I am under Charing Cross

I had my Bronchoscopy at St Marys, my mediathanoscopy at Hammersmith - Ducane

To be honest I was a bit out of it and willing to go with anything.  I'm at St. Marys as it is a 10 minute walk from my home.  Spent sometime in Charing Cross after an accident a while ago and had a terrible time - I hope you're being treated well? Also there are a couple of Sarc specialists at St. Marys which is fantastic (my consultant is simply lovely).

Glad that you are happy with your specialist which is a huge factor

I must say I have had really good treatment for all the departmenst I have attended at Charing Cross.

My Sarcoid consultant is brilliant, and I am able to email her or call her secreatry at anytime which is fantastic.

I have only ever been to St Marys once and that was for the Broncho, but I must say I did loose a bit of faith when they took neumerous samples - as I listened to them counting them all..ha ha, then I was told on going back to Charing cross for the results that there wasnt sufficient to grow - although they still did, and that they was too much blood,  hence I had to have a further operation resulting in a 3 night stay at Ducane.

But guess i was just unlucky.

Perhaps it was just the orthopaedic department which sucked at Charing Cross! 

I had a horrible bronch, followed by an even worse EBUS.  I feel your pain (and frustration).  I don't envy your hospital stay one bit.  Maybe they're just generally tricky procedures? 

I think having a decent consultant is super important, but I'm still at the initial diagnosis stage (and waiting on more tests) so I hope I stay where I am. 

Yes, I totally agree Linda, it does seem like a waste of money.  I was thinking of you when I posted as I remembered how awful it had been for you. It was only the two of us initially on the forum and I will never forget how much better I felt after chatting with you. It's hard to believe it has been over a year since we started chatting and how many new people there has been and how we have learned so much more about the disease through everyone's postings and research. Not to say the general comiserations we feel towards each other when trying to be supportive at the worst times. I think they would still go for TB being the test results no matter what because the initial symptoms are the same and I guess there is a comfort for them to go for what is 'usually' the test result as opposed to taking a leap of faith and going for Sarcoidosis.

I honestly think GPs need to be a bit more observant of their patients though, especially when we have more and more imigrants and temporary worker from poorer countries who either can't afford to get vaccinations or are never even offered it. I'm meaning before they even leave their own country. I wonder if there is a mandatory health check done for new imigrants and migrant workers and even if their is what about the illegal imigrants. How do you monitor them for illnesses? 

Hi Boomatunn and Linda,

I see Dr Coker at the Hammersmith as the follow up for the embolisation. I think she also covers Charing Cross. I also go to the Sarcoid clinic at the Brompton, but they decided to share care with the Hammersmith following the haemoptysis crisis. Di

Doesn't make sense to give anyone TB medication unless you're pretty sure they have it! They tend to be extra strong and not recommended unless essential. Even for people in an area where TB is prevalent.

One of my friends works in Strathclyde Uni in Glasgow and she had suspected TB as she had a cough that wouldn't go and Glasgow (particularly the student population) is another area with lots of sufferers - but they wouldn't treat her until they were sure. Good news for her is that it wasn't TB, just the remnant of a bad flu that refused to disappear completely.

A year....havent we done well...ha ha.

Immigrants - what hope have we got!!!!

I doubt very much if they are offered vacinations before leaving their country, and even a bigger dount they have a health check when arriving here.......but who knows...as of course it is FREE here!!!

It is worrying that TB is back. I was being treated at a hospital near me, rather than the Central London one I now attend, and they tended to do 'mass' chest X-rays, where they would send all those having chest X-rays through to the changing area -  small side room with cubicles - at the same time. I was sitting next to a man waiting for my xray when the technician came out to ask what we all had - well, yes, you've guessed it! He had TB!! I have to say it did worry me and it was one of the reasons I asked to be referred to the Brompton.

WELL.....Dr Coker is also my consultant.  She has now moved her Charing Cross clinic to Hammersmith.

Who knows our paths may of crossed - a small world indeed!

How do you find her?

Actaully when I used to attend the TB clinic in Charing Cross, we all sat together in the waiting 'corridor'  I used to say then, this sint right really we are all in such a close proximaty.  Fortunatley I was given the all clear!!!

I've found her very helpful, in fact, she introduced me to patient.info which how I found this forum! She printed out information on bronchiectasis and haemoptysis for me, and suggested pulmonary physiotherapy which led to my doing the pulmonary rehabilitation course ar Harefield.

So there's a few of us nearby with sarc.  Do you ever meet up?  I don't know anyone else with it. 

I know, it's stupid.  Basically something on my CT scan in my lungs looks very typical of TB but if what was in my lungs was TB then I'd have been feeling VERY sick which I wasn't (no cough, fever etc). 

I am pleased your friend didn't have TB   It's certainly not something I'd want to have - if nothing else it limits where you can travel and for me thar's be a nightmare. 

There are the SILA meetings on Thursdays but they are at Kings which is terrible journey from where I live in north west London. The charity also hold meetings in Birmingham and I reckon it would be quicker and easier to get there! We could just all meet up  - anyone else in the south East/London area interested? Di

/ Boomatunn

It is unreal so many of of us so close, and even two of us under the same consultant.

Majority of people on here seemed to be in Scotland, but with all the newer people joining is great to hear we are widespread!

Albeit it is a pity the reason we are actually on these forums, but hey ho we can stick together and support each other. x

 

You need approximately 8 hours of exposure to someone with TB who is actively coughing to get sick.  Obviousy that doesn't apply to those with suppressed immune system and other illnesses.  If it was super easy to catch you'd get it sat next to someone on a bus (this is what I remind myself to reassure myself!). 

I saw the SILA meetings but thought the same as you - simply too far to travel, especially after work.  There's a UK Facebook group who I think meet in London sometimes but I don't really know much about it. 

I know she is a stickler for advising only to co onto the patient.info website and no others.

Has she asked you to fill out a form re 'more research' group?

The amount of time I spent in the TB clinic its a wonder I didnt contract it.....

 

To be frank I can't remember, I have filled in so many forms over the years!

To be honest I wasnt aware of SILA meetings, and I am not on Facebook!

But would be interested in any updates.

 

I comforted myself with the thought that if they let someone with TB come into a hospital they must be on treatment and hopefully not infectious. I know they do still isolate those with active TB.

Yes I know what you mean.

This was a campaign they were launching last year - for more awareness

Thanks for the info, I've found the Facebook group and someone has just posted a really useful link about claiming benefits if you have sarcoidosis. 

They were rubbish with me - no joke.  They thought I had active TB and I was the one who refused to get into a lift with a newborn baby (I know... 8 hours... but it was a baby).  It all seemed a bit odd.  I was told not to go out, not to go to public places or the office etc... but could sit in a waiting room with sick people.  It's fine if you've got sarc and a wonderful over active immune system killing everything (I have not been sick for forever) but obviosuly the second they start treating it then that's different. 

Yes a very good way to look at it, but I was sent to that clinic on the assumption that I had it, and had to sit amongst many others.

In actual fact whilst attending that clinic I actually met 3 other people that I knew personally for many years.

Needless to say none of them had TB, but I guess I ended up being the most fortunate of us all, as all three of them had a unpleasant diagnostic outcome.

No problem   There's also a subreddit if you're on reddit but it's not very active. 

Wow - thats a breakthrough.....finally being recognised!!!

Mixed standards comes to mind

At the time I was being treated for TB my 2nd granddaughter was born and intially I wasnt going to be allowed to see her!!!

 

Yes there's a definite lack of consistency and mixed messages.  I understand that there's no point scaremongering and I take a scientific approach to most things but that means I don't like the lack of consistency.  If I can't go to the local shop then I shouldn't be able to sit in a waiting room for 2 hours with sick people in it. 

So they let you see your granddaughter?  That would have been awful if you couldn't have seen her!! 

Just to say theres several different sarcoidosis groups on Facebook. Been skimminog over them and looks like the best/most useful is Sarcoidosis Awareness Product/Service with a "Yes You" as its profile picture on posts. Think its the one that Di has found as its got a link about claiming benefits as the most recent post. Some of the others are very very American or seem to be trying to persuade you to buy a t-shirt advertising sarcoidosis, presumably to raise awareness. Don't think I'll bother thanks

The one I'm a member of is a closed group called something like UK Sarcoidosis awareness support group by Ann and Wayne.  It's very much a support group where people post and share experiences/ask for advice.  Thanks for the heads-up on the other one - I will join that too.  And nope, also not interested in buying t-shirts! 

...we have all worn the T shirt....

 

I'm on twitter and find Sarcoid Network excellent.

Very wise Morag. I've noticed several with the hand out for money. Didn't see one charity registration number so definitely wouldn't hand over any cash. I'm so fed up with charities not using the money we give them for what we think they are using it for. Too much goes on advertising and paying the 'volunteers', My daughter did some volunteer work for Save the Children  a couple of years ago and was offered a job but she refused it as she was disgusted to see how high the salary was for the job she was offered. I know that sounds crazy but she also found out that the salary came out of the charitable donations so couldn't live with herself if she took it knowing that the money intended for starving children would be going into her pay!

I have researched a lot of charities funding etc and often wonder if they could write any smaller when quoting where your donation money goes apart from where you think it is going.

That's amazing information! I was driven out of work because of my sickness record due to sarcoid and several ops that all went pear shaped!  Would be really interested to know more as DWP are being a pain at the moment.

Yes ive heard of this quite a lot recently.

My sister in law had breast cancer many years ago and she is a 'volunteer' of some kind now within her local hospital, but my brother get so annoyed the fact that seminar trips & accomadation comes out of 'donations'

 

Sorry, I was out last night and seem to be getting these messages out of order so I'm not sure which posting you.re replying to.

I work for a big charity and get paid with company car my job is to look after volunteers and train new managers how to work with them - I travel from Scotland to cleetorpes I have 140 shops and 2000 volunteers in my area - I have stopped thinking about it being a charity it's a very big business - we do have seminar once a year that we have to dress formal for which I don't agree with and the cost is in the thousands - out wage bill is probably over sweaty million a year - we take about ten million from the tax man in gift aid - 

we get a lot of money from legacys - people that die leave us around thirty million a year - fundraising about thirty million retail about twenty million and so on - we spend over a hundred million a year in research prevention and care - we also part fund and fully fund doctors and nurses in hospitals - we have a 24 hour help line and community nurses - we advise the NHs on spending - we buy some of the equipment used in hospitals - we train people on saving lives - we train people in shopping centres on how to save lives - we supply cheap travel insurance for people that can not get it - we have after school clubs for children that have suffered a loss - we put a lot of money in to change polices like stop smoking in public places was in the millions - but with out one we can not have the other - but having said all that. As a big charity we still have wast x swings and roundabouts sometimes 😱😀

You sound as though you are doing a wonderful job. And of course it needs people like you to help it run smoothly so there has to be expenditure.

But it seems there are some events that are totally unecessary whereby the money could be saved within certain charities.  This of course needs to be addressed by the people at the top not the actual volunteers or workers who are worth their weight in gold.

I guess I'm just skeptical about where the money goes with a lot of charities.  I'm all for raising awareness though.

(sorry didn't log on when I got back last night)