I was so annoyed when I received the news that this procedure was not available on the NHS. I wanted them to explain to me how they perceived this debilitating condition was not enough of as a serious issue to fund.

Dr Dixon has been so brilliant through all of this he knew I wanted to keep pushing as it was unfair. My husband (bless him) wanted to pay for the procedure earlier on however because they had not out right said no i was adamant to carry on.

After having many conversations with them, being rejected and then appealing (I even got my local MP to write a support letter of how me being on medication and not being able to work is a lot worse of for the government than me possibly getting better and starting to work and contributing to the government).

I realized I could fight this for all the British  women with PNE and if eventually they say yes then all the ladies from my PN family could also get this procedure on the NHS and right fully so. I mean at this point I was so frustrated I said to my husband if others can get cosmetic surgeries paid for then why not us (urgh!).

The email I recieved from my ccg was as follows:

Dear Amera

You are more than welcome, I hope I had clearly explained the pathway to which should be followed through UHB.

However to summarize our conversations from earlier:

Your GP followed correct pathway to refer you to a pain management clinic which is based at the Queen Elizabeth hospital, however when assessed it was apparent that you required a highly specialized pain clinic which is provided by North Bristol NHS Trust.

This referral should not be done by your GP but by the consultant you have been reviewed by at UHB in order to follow the correct pathway. Additionally, it is confirmed that NHS England is contracted to provide services  for “Highly Specialise Pain Management”. This is commissioned in line with an agreed care pathway and referrals/applications for funding need to be submitted from “Adult Highly Specialise Pain Management Centres”. As the correct commissioned pathway was not followed and the request for funding has been received from the GP, the criteria in line with the national NHS England Policy.

 

I have spoken with a member of the complaints team at University Hospitals Birmingham NHS Foundation Trust, whereby I have explained the above to them and notified them of the correct pathway. I was told that Dawn from PALs will ring you and liaise with yourself directly.

Should you require further assistance please contact me.

Kind Regards

=======================

Customer Care Officer – Quality Team

Sandwell & West Birmingham CCG

Kingston House | 438-450 High Street | West Bromwich | B70 9LD

www.sandwellandwestbhamccg.nhs.uk

Direct Dial: 0121 612 3495

Customer Care: 0121 612 4110

 

Below was my response and  last letter of desperation to my local CCG, and NHS England.

 

Dear CCG

I am a qualified mathematics teacher and a mum of 2 lovely children. I have been working on and off since 2006 up until 2012 at the time as a teacher and most recently as an examiner. I was previously a governor at my daughter’s nursery and I always wanted to partake in community events. I have never claimed for any benefits even when struggling with this condition and my job has allowed me to contribute to the government via my taxes.

I loved doing kickboxing, going for walks, loved theme parks and taking my daughter out about to explore different locations for educational purposes.

After I had my son in 2011 I have been suffering from Pelvic Pain. I returned to work after my maternity leave as a tutor with minimal hours which I tried to manage around my condition. I stopped working in August 2012.

Throughout the last 4 years things have progressively gotten worse. I have never claimed for any help due to not working as I always hoped they’d find out what it was. I am not asking for the funding without having exhausted all avenues. Here is a list of the hospitals I have been to in Birmingham and what has been said.

City Hospital – Physical Therapy which aligned pelvis but the underlying pain was still there. I was then referred to Royal Orthopedic Hospital

Birmingham Women’s Hospital- Looked into Endometriosis and after a Laparoscopy in which adhesions and endometriosis were fixed. The pain in the perineum got much worse. In the end whilst looking at all my symptoms and a sensitivity test by a pain consultant a diagnosis was made of Pudendal Neuralgia and I was referred to Queen Elizabeth Hospital

Royal Orthopedic Hospital- They were looking after me at the same time as Birmingham Women’s and the  came to the same conclusion however they said it was a very rare condition and said that they were not experienced enough to deal with as none of the consultants had come across this type of neuralgia and I was referred to QE.

Queen Elizabeth Hospital Birmingham- Whilst at QE it was evident that although the consultants there were aware of neuralgia but even they had no experience about it.

I have been told that the reason for rejection was because the correct pathway was not followed. I phoned in my self to speak to one your colleague who was lovely when dealing with my very emotionally distressed self. She explained that the pathway includes me being re-refereed by my GP to a pain clinic which would then review me and send me to a highly specialized pain clinic in line with the NHS England commissioned care pathway and then from there I could get referred for the procedure on NHS England 

I was very distressed at this for many reasons

1. How was my GP not aware of this pathway.
2. I have already been with the QE pain clinic for the past two years who openly admit that they have no experience in the pudendal nerve and when I told my consultant that my GP was going to refer me to Dr Dixon in Bristol even then he failed to mention to me that it was actually the pain clinics job to make the referral.
3. I have already seen a consultant Dr Gareth Greensladefrom a ‘Highly specialised pain clinic’ in  North Bristol Trust albeit privately ( but I did this only because my actual consultant at the time disappeared leaving a back log resulting in my appointment being moved a whole year forward) Dr Greenslade performed a diagnostic pain block on the Pudendal Nerve which was positive and it was him who asked for me to visit Dr Dixon to look into a possible high grade prolapse adding to the symptoms.
4. When the first application was denied it was then that I asked my GP to refer me to Dr Dixon through the NHS and again my GP did not feel the need to explain to me about the apparent pathway and that it was my pain clinics job to do this.
5. It is evident to me that I have been seen by all the people that you have recommended me to see but not in the pathway you have proposed. I feel that after 4 1/2 years of continuous debilitating pain gradually getting worse, asking me to go back and visit the same people but following a pathway is a) a waste of taxpayers money  and b) a gross negligence in my care as an NHS patient.

Doing the procedures together  will significantly improve the quality of my Life.

If I had been informed by any of my NHS consultants and GPs responsible for my care, of the pathway I would have followed it as it is obvious I have visited everyone in that pathway.

I feel neglected and at present am very confused. I am even thinking of looking into a law suit as I have lost years of teaching, socializing and life in general because of lack of communication within the NHS. I feel as if my pain doesn’t matter that you are willing to waste money taking me through all of it again (whilst i will still be in pain and sitting at home going crazy) just so the boxes are ticked in the right order which was down to the NHS own neglect of communication in the first place.

I am requesting that you take it in your hearts to find me a solution. I am desperate and at the brink of break down. The reason I am writing to the both of you (NHS England and Nick Harding is so that a communication can finally occur. I need this procedure this year so I can recuperate and find some relief, therefore please can you get back to me quickly.

Kind Regards

Amera

 

Even after this letter I was told I still had to through the pathway regardless of the costs to the NHS, so that’s exactly what I did:

Step 1. GP

Step 2. Consultant at hospital

Step 3. Tertiary highly specialized pain clinic which was ‘Southmead Hospital’ and I saw Dr Greenslade

Step 4.  Dr Dixon.

I then asked Dr Dixon’s secretary that this time according to what was said I can now just get the procedure done through NHS and low and behold she told me they had accepted.

Finally I had done it, I had actually done it. It felt so surreal. I still remember looking and saying ‘thank you’ to god whilst I started to cry. I can never explain that feeling of relief, it was now a distant future but in the grasp of my hands.

I decided to  to write about my journey through the NHS so that everyone could understand this path way. Also to no never to give up, there are many countries where yo cant fight for your rights and here in this country that I am immensely proud of , in the end it was my tenacity and perseverance that eventually let this play out.

I will always owe the people that helped me through this My husband, Dr Dixon, My PN Family and my family. I love you guys.