Obstructionists at the Practice Manager Dept

Please post here your experiences of MDS as a patient, carer, family or friend

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Goldtooth
Posts: 32
Joined: 01 Apr 2015 10:15
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Obstructionists at the Practice Manager Dept

Postby Goldtooth » 07 Jan 2017 08:04

I have MDS RAEB2 and am very aware that I have to avoid infection at all costs.
I am starting my third year of Azacitidine next week, to date it is still effective. At my blood test last month my white blood cell count had dropped and the staff nurse quite rightly checked with a pharmacist if it was ok to proceed with treatment he said it was.
The most probable cause was a sinus infection that I had only just started a course of antibiotics for. My GP who is aware that I need more than a weeks supply to cure this and has given me a supply which he will willing top up should I run out.
The sinus infection is very stubborn, I had the same problem in 2014 when I had started treatment, it was only due to the diligence of an ENT consultant that it was discovered that neutropenia was was the cause. For 3 years my previous GP had ignored my symptoms even when I started getting severe nosebleeds and never referred me to a specialist, I asked him to arrange a FBC and when the results came to the attention of another doctor at the practice who phoned me late one evening to say I had a bone marrow problem. When I saw my GP he said he wasn't worried about the results and hated when someone did his job!!!
I was unable to get to my new GP over the holiday so once again contacted the ENT specialist privately, who gave me an Endoscopy and a longer prescription of antibiotics.
He also copied my haematologist and GP with his findings.
Because I was concerned that my pre chemo blood test would again show anomalies I contacted the Chemotherapy Matron at my hospital. First by email explaining all the above. She immediately phoned me to tell me that she had given the relevant details to my haematologist, who told her in view of my past blood tests she was quite happy to continue treatment. The Matron has also advised the clinic so that they are made aware when I start my next cycle 9/1 of any anomalies in the blood test taken on 6/1.
Every member of staff in the hospital involved in my treatment are superb, my GP is aware of my condition and is very cooperative in attending to my needs.

My issue is with the Practice Manager who I complained about the negligence of my previous GP.
I took this up with him by email, and received a letter from one of his clerical staff who I phoned yesterday. She phoned me to say before any complaint can be investigated I must provide a list of my concerns and a meeting will be arranged with a clinician present.
The only list I can provide is the dates I had private medical care including a finally getting a proper diagnosis from a haematologist within a week who is now treating me on the NHS. If my previous GP had not been so negligent my MDS would not have been so critical.
I spent £9.550.00 on private treatment which was money well spent as it has to date given me two extra years of life, which I wouldn't have had if I'd not seen specialists privately.
The person I spoke with at the Practice Managers office seemed unnecessarily hostile.
The proof of negligence is already on my medical records, so any list I have isn't necessary.
My time is limited and I wish to enjoy it as much as possible in peace which I won't get if I get into long rounds of useless meetings and correspondence and sent an email to the Practice Managers office saying this including the facts of my case are in my medical records and I have nothing to prove as the proof they already have.
The care I receive at the hospital is beyond reproach and my GP is very amenable to my requests.
Goldtooth
Posts: 32
Joined: 01 Apr 2015 10:15
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Re: Obstructionists at the Practice Manager Dept

Postby Goldtooth » 11 Jan 2017 16:42

Further to my post(Goldtooth)7/1.
I emailed the main points raised to the generic email address at the Practice the same day as this post.
I received an email reply with an apology for the hostile response. Also a complete u-turn regarding me supplying them with any list etc now it's not needed as they have all the information that they need.
This I had tried to make clear in my original phone call. I'm very surprised that it took them so long to realise this. It seems clear to me that my records had never been examined to check that my complaint was justified.
I'll post any update
Anthony
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Obstructionists at the Practice Manager Dept

Postby chris » 20 Jan 2017 11:17

Hi Anthony

Sorry to hear of your less-than-helpful response from the GP Practice Manager's office. I'm afraid that hearing the word "complaint" sends people straight into defensive mode because of fears of litigation etc. Mistakes are made in General Practice and, to be fair, they must be dealing wity such a huge range of likely problems that a rare disease like MDS can easily slip under the radar. The GPs I saw in early stages of MDS not only missed the MDS, they also missed some red light symptoms which should have been investigated as a matter of urgency - e.g. ascites and pleural effusions in both lungs!! And this in a patient who infrequently came to the GP and then came twice in 2 weeks!!

I recently had the opportunity to see both the GPs I saw at that practice when I was so ill (I'm not there anymore - unsurprisingly) to hand them our MDS Patient SupportGroup GP MDS Diagnosis leaflet at a Clinical Commissioning Group training day. They both waved the leaflet away saying they "knew all about it" and one even said that he had lots of expertise in haematology!! So arrogant - 8 years after they failed to refer me!!! When I changed practices I was immediately sent to the hospital for lung X ray and blood tests and, even though my diagnosis took a further year, at least the GP took the correct action!!

I wish you well but strongly consider whether you want to waste precious energy on a formal complaint - it's a long, hard road!!

Best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Goldtooth
Posts: 32
Joined: 01 Apr 2015 10:15
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Re: Obstructionists at the Practice Manager Dept

Postby Goldtooth » 21 Jan 2017 07:37

Hi Chris,
I not wasting much time complaining, I'm aware that it's a complete waste of time.
I only sent 1 email because of the high handed manner of a minion at the Practice Managers office when I phoned them.
I certainly don't expect a positive response, without exception all the clerical staff including receptionists at practices are all jobsworths!!
I sent the email mentioned above and put the whole issue from my mind.

I'm sorry you had the same problem with your diagnosis, and probably many more sufferers have suffered the same fate.
Maybe that's why MDS is classified as rare as many patients have died of infections etc before it's even been detected??

I wish you well in your present treatment, Azacitidine is still working for me. Two weeks ago I had the first cycle of my third year of treatment.
My very best wishes
Anthony
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Obstructionists at the Practice Manager Dept

Postby chris » 03 Feb 2017 15:17

Hi Anthony

Yes - you need to choose your battles and save your energy for the ones most likely to succeed or make a difference!! Maybe you could drop off a few of the GP diagnosis information sheets at your GP practice? You never know - it might help somebody in the future? Either print them off from this website or I'm sure Sophie could send you some?

Glad your Azacitidine treatment is still working for you and long may that continue. I haven't had to have any treatment so far - which is nice!!

Best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex

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