MPN Voice
3,371 members5,063 posts

Poor NHS Administration

I had tests for MPN at Hospital following a mild stroke due to high platelets. I had test for JAK2, MPL, PV, Factor v Leiden and lots more. I was told I would be advised of the results. After 3 months I heard nothing. I contacted the hospital and I was then told the results were sent to my GP and must have been ok so not to worry. However not being happy with that I asked for a copy of my results which they agreed. I then contacted a couple of friends who are both GPs and asked if they are qualified to interpret theses results, they said no, it has to be checked my a haematologist. I phoned the hospital back and said did a haematologist check the results they said that's the routine and it must have been ok and a copy would have been sent your GP. I contacted my own GP they said they had not received results, nor were there any results were even on the system and if they were they wouldn't even look at them as they could not interpret the results and it is up to the instigators to have the results checked. I contacted the hospital and said just let me have the results and I will get them checked. They said ok again I didn't receive anything. I contacted the hospital again said no way can you have the results, I insisted and they said no, I told them that I worked for the Ministry of Justice and under Data Protection Act Part ll - Section 7 they have to give this information, they said we are not giving you the information for your own good. I contacted haematologist myself and asked them to send the paperwork to him, which they agreed it showed positive for ET MPL and another mutation. The paperwork had been filled away ! - All the hospital were interested in if I was going to sue for compensation, it was only when I said I have absolutely no interest in doing that, but I obviously know now that you have missed a serous illness and I want to start treatment. Only after this reassurance did they release all the paperwork. Unbelievable behaviour by the NHS.

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This is terrible treatment. You are entitled to know your medical results and notes from any Dr or hospital. Lyn

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SCANDALOUS!!

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That's shocking Raff... had you not pursued it you would not have known you had an MPN which could have had very serious consequences... I also find NHS services disjointed. I was admitted to hospital with very high blood pressure just before diagnosis. They thought I was having a heart attack and so ran a battery of tests and kept me in for a few days. There I had daily blood tests done, all with abnormal results, but never once was a haematologist called or the issue noted, as I was under the care of a cardiology team who were testing for heart rather than blood problems. No heart problem was found. I asked for all my test results at the end and the ward nurse photocopied them for me. Subsequently I went to the GP who immediately referred me to haematology. They diagnosed likely MPN on the spot and ordered genetic testing. I learned from this that there is no spare capacity on the NHS to see the whole picture. I got excellent care in cardiology, regarding the heart testing, but the MPN was completely missed too. I fear things are only going to get worse in the current crisis. Susana 💔

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Unbelievable, you did the right thing, I think you need to take control of your own health and don’t just leave in the hands of the NHS.

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I would now sue them!

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My partner has had his mpn for 3 half years we only found out last yr as he was admitted to hospital. On 3 occasions they missed it and didnt follow through unfortunately he suffered a sinus thrombosis he is ok thank god, but we have sued due to the fact of missing it on 3 occasions .

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The NHS administration is abysmal.

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Wow! You're not in MiltonKeynes are you? 🤔

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Down a bit, St Albans. I shop at CMK

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Well, what a surprise. Not.

The dreadful administration in the NHS never fails to amaze me, it goes hand in hand with the scandalous waste I'm constantly banging on about.

All to do with lackadaisical management and admin under a government bubble. If this was a private comapany run by an efficient board it simply wouldn't happen. I'm not saying the NHS should be privatised but by gum, the management need hauling over the coals.

I'm afraid all you can do is let them know you've the got the measure of them. Going down the sue route won't really help anyone - it will be stressful for you, and will get the backs up of the people you're suing.

However, you really MUST be your own project manager and check absolutely everything connected with your treatment.

Louise

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Absolutely agree, I do project manage my own illness. I certainly don’t want compensation I only want a better health service.

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Think I'll get a posse together to chain ourselves to the railings at the end of Downing Street.

Any government can promise to throw as many billions as it wishes at the NHS but unless the basic management changes nothing will improve.

I have SUPERB treatment at Christie's in Manchester, but it's a dedicated centre of excellence specifically for cancer, run by wonderful, professional and knowledgeable people..

Heaven help others I say.

If this was our company my husband would have sacked the bloody lot of them by now. And no, I'm not apologising for the swearing!

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Absolutely shocking!

It does make you wonder about the consequences for patients who may not be as vigilant as yourself.

Mary

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That’s what I worry about.

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Hope this horrible issue ends for UK

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So that's where my results went . . . ."The incident came to light in February, when NHS bosses were forced to admit that, between 2011 and 2016, some 709,000 items of correspondence – including details of test results, change-of-address forms and other personal information – had been left gathering dust in a warehouse"

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Truly awful treatment I hope you get a decent apology. Anyone thinking of suing needs to bear in mind that individual staff are often insured through their various unions or professional bodies but the NHS generally does not have insurance. Any money sued for sadly just comes straight out of their annual budgets further affecting services.

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