This me saying it as l found it, to which many may not agree. My consultant arranged for me to see Prof Wells team as its been nearly four years and he does not know what l have to treat correctly. Having left Brompton lind ward fri after a two day stay, l can honestly say nothing went to plan, starting with no bed on arrival or knowing when one would be available. To giving me forms for tests to be done, which the dept concerned knew nothing about, not to mention tests that l had no been discussed with me.
The ward staff had no sense of humour, it was like a morgue. Not even a cheerful smile. Left there the same as l went in with no answer. Where does that leave me but in limbo. My consultant cant treat me without a positive answer, my gp works along side with him. So back to start, with the prospect of healing myself. Brompton said as nothing was serious enough they implied l did not warrant they time. Great! Did offer me a review in eight months if l wanted it. However that was an after thought. Last remark from them.....visit a gym.
Amused l think not. Meant to be top in their field being a lung hosp. Really need a shake up. JUST MY FIRST HAND REVIEW.
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Be not serious but it's causing me pain. My constultant sent me for an answer in order to help me, which l did not get. They did advice me that if as they think it's connect tissue disease it will effect all my body not just lungs. Understand some people are seriously ill, but if we're honest, were all after a good quality of life.
I must admit Pamillia that Pete is not being cared for by anyone at the Brompton for his lungs. Ha has had sarcoidosis for 25 years and been under the Brompton for around 18 years but has never seen Prof Wells who is supposed to be an expert in sarcoidosis.
Doesn't quite make sense to me. Pete is due to see the Professor in January 2017 so no rush then!
Sorry to hear that Pete too has recieved problems under professor wells. I have heard he's due to retire soon hence he has handed most of his load off to Mrs.K, as l know her. It's not an English surname. As for an answer they have given me a maybe. However, l will be sending an email expressing my concerns as how my administration,treatment was handed to the PAL.
Hi Pamillia, I'm really sorry to hear that you had a bad experience at the Brompton. I've been a patient of theirs for many, many years and have always found them to give first class service both as an out and in patient. If you go for another appointment insist on seeing the doctor that heads the clinic as, from experience, this is the way to get the best advice and care. I must admit I've been to Lind ward for different tests, not as an inpatient though, and do find the atmosphere up there very different to the rest of the hospital, not particularly friendly and a little like the patient is an inconvenience. Joy 💐.
ur words express it all, especially how they make u feel. There is no need for it. Have now forward a letter to PAL, expressing my feelings regarding my stay. Wait to see what happens next.
So sorry all this is happening to you Pamilla. What a way to treat patients - or perhaps NOT to treat them. Could your GP not refer you to another hospital dealing with lung illness? Anyone suffering from not-working-very-well lungs is ill and deserves the best treatment possible. Hope this will work out for you.
its the top hospital for lung illness and my consultant sent me to get a positive answer so he can treat me. all l got was a maybe illness, not helpful. My gp would rather l left it to my consultant as he's from another hospital trust and feels it will confuse things, also consultants hold more weight to get u in earlier. Consultants carry all ur notes plus able to forward ur scans across, which he did marked urgent, to which l got in 6 weeks instead of the usual 16 weeks. Cant fault either my consultant or gp, as they are and have been doing everything to get this sorted.
However Brompton feel if it is as suggested connective tissue diseases , its not worth worrying about until it develops more. As such they will be able to see what its attacking and name it. Until then, they suggested more acid tablets, and gym. Until letters go out, I have no lung medication and have not for a year now. As to when l will get a follow up by my consultant l have no idea. Its not just the lung illness its also the effect it has on the family, travelling there and hoping for an answer.
thank u for ur kind words. x
What a shame you had a bad time. Just to reassure you, if you decide to go again in 8 months, I've been on Lind many times over the years and the staff have always been lovely. So I'm hoping your experience was a one-off! It IS hectic, as it's a short-stay ward where patients look after themselves, so it's a hive of activity. They ask everyone to come at the same time because they can't be sure what time your bed will be available, so yes there is a bit of waiting around, ditto for tests, but you seem to have been particularly unlucky.
It must be so disappointing not to get a firm diagnosis at this stage, but remember they are at the forefront of lung research, and the unit Prof Wells runs is, I believe, the largest of its kind in Europe, so should you (god forbid) get worse, you'd get the best possible treatment. I'm so glad to have them in my corner, as my condition has got more complex over the years & I've reaped the benefit of their knowledge & expertise so many times. So I would say, even though you had a bad experience this time, give them another chance. I hope you get a good response from the ward manager.
I have never seen Prof wells., so l have been what l believe to be under his investigation team. To give u an example of how the nurses were like ,I had a male nurse call my name while waiting for a bed in the reception area, late afternoon., he said his name, then continued to walk away leaving us to follow him. Pointed to my bed and say that's ur bed, notes have to be done, then once completed walked away and that was the last we saw of him. Before he left l asked for a jug of water, two more people were asked also, and seven hrs later it arrived. No what l was expecting going by other peoples remarks who have been in that ward. Tests not actioned correctly, one test , being a tube from my nose to stomach, I knew nothing about. That's only a few of the problems l had during my stay. What did happen had to be addressed hence the email to PALS. Have no idea when u were in last.
I do not feel what l have raised concerns about to be unwarranted.
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