"No diagnosis and no help with the pain"

About: Calderdale PCT

(as the patient),

I will try to cut a long story short.

I'm insulin dependant diabetic. 4 years ago I started having problems with a sore mouth, gums. I saw 3 different dentists who all said the problem is related to diabetes.

I spoke to my GP\Nurse Practitioner\anyone who would listen at my local surgery. After about 9 months the healthcare technician suggested I might be anaemic. She included the B12 test in the rest of the blood tests being carried out at the time.

Results came back, B12 extremely low. Saw Doctor who informed me that I would be on B12 injections every 3 months for rest of my life.

Everything okay for a year or so and sore mouth and gums returned. Saw dentist again and told it’s related to diabetes \ B12 deficiency. Saw different Doctors and Nurse Practitioners who said it’s a dental problem.

I asked for pain relief and told it sounds like I might have an addiction to painkillers? Which is absolutely extraordinary because I have only ever been prescribed pain relief 2-3 times.

I contacted PALS who spoke to the Doctor. When I saw the Doctor I found them extremely rude and unhelpful. they told me that they were not interested in my complaint and wanted to know what the problem was.

I have tried various medications from online pharmacies, some of which is probably illegal (not sure how legal some of these online pharmacies are!) The person I spoke to at PALS told me it wasn’t a good idea to buy anything online and destroy anything I had bought.

I changed to another Doctors practise hoping that the specialist diabetes Doctor would be able to help. Saw Doctor, Nurse Practitioners and still no diagnosis.

4 years later I am still in pain when it flares up and no nearer a diagnosis. I am not happy with the level of care I have received from Calderdale NHS and PALS. I feel as if I am in a situation where I cant win. No one knows what’s causing it and no one is helping with the pain so I am having to make my own arrangements.

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Responses

Response from Assistant Director of Involvement, NHS Calderdale

Thank you for your posting. I am very grateful to you for taking the time to feed back your experience to us.

I am sorry to hear that you have had a difficult and worrying time and understand how you might feel let down by your care.

We want to assist you in any way we can in sorting out your problems, so would like the opportunity to discuss your situation more fully.

Please could you contact our Customer Services Manager on 01422 281471.

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Update posted by Drew (the patient)

Dear Sir \ Madam

Thank you for taking the time to respond.

As you can probably appreciate after numerous visits to Doctors \ Dentists and speaking to PALS I feel that contacting yet another department in the NHS a waste of time and effort.

I have no problem at all contacting you to speak about the Doctor who was extremely rude and the problem in general, I just feel that trying to get a resolution will end up with me in tears (again) and further adding to my frustration.

I can send you my contact details or if you like you could let me know who to contact on here.

Regards

Response from Assistant Director of Involvement, NHS Calderdale

Thank you for your reply.

We do feel it is important to listen to your experiences and help you where possible, so would like to discuss this with you.

We wouldn't want you to put personal information on this site so please could you contact our Customer Services Manager on 01422 281471 to discuss this further.

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Update posted by Drew (the patient)

Dear Sir \ Madam

As advised I called the Customer Services Manager last year on a couple of occasions and was promised a reply. Sadly I am still waiting.

The only response I had from posting on this site was an invitation to appear on a radio program about the Patient Opinion website. Unfortunately due to 2 immediate family bereavements within 2 months of each other around the time the program was broadcast I wasn't up to appearing.

I thought this web site might have helped or pointed me in the right direction but all that seems to have happened is the same as what happened with Doctor's and Dentists, no one know's what's causing it so I'm passed on to someone else who will listen patiently and recommend contacting someone else. 5 years later on the pattern seems to be the same.

As you will see from my last response,

"you can probably appreciate after numerous visits to Doctors \ Dentists and speaking to PALS I feel that contacting yet another department in the NHS a waste of time and effort" - I was right!

Regards