In the early part of last year I registered with a new doctors surgery not far from where I lived. I was allocated an actual GP as opposed to having many. I naturally assumed this would mean that I would get better care as well as continous healthcare. Initially Dr M (I shall not name him) seemed to be incredibly helpful. He changed my pills and ensured that the majority of pain was eased. I genuinely thought he was going to help me.

After a number of weeks, 3 weeks in fact, he was asked to write a medical report about me for several people. One of those people told me they waited 6 weeks to get a response from him despite chasing him. Such a report needs to detail all my medical conditions as well as the medication I was on at the time. I had also not yet been diagnosed officially with HS.

Shortly after moving to this surgery I applied, with the help of a local housing charity’s Benefits Advisor, for Disability Living Allowance. I had, by now, realised my GP was awkward and I discussed this with the advisor who reassured me that I would be ok for now and that there was not a need to change GP’s having just moved there. It was pointed out to me that it would cause issues with my medical records.

My DLA application was sent off and I waited for letters informing me of their decision. My GP was contacted, this is normal practice, and asked to send a detailed medical report about me. I was made aware that they had done so and in order to ensure Dr M knew time was of the essence he was politely reminded by the reception staff.

As mentioned previously I had to fight to get DLA. I ended up having to go to Tribunal. If you have ever been through this process you will appreciate the stress and potential heartache you go through. As with any appeal that goes to Tribunal you are sent a copy of your application file, this will include your application form as well as any reports or letters sent to or from you. You have to bear in mind as well these documents are long as well as rather draining to read. It was at this point I noticed that there was a problem with the medical report written by Dr M. The report was the same report he had written months before for other people at the start of me being with his surgery, he had merely changed the date and addressee. This report was written before my paperwork had reached the surgery but the electronic transfer had taken place but it would appear this GP did not read any of it. He simply went by my symptoms I had discussed with him literally the day before, it was before he adjusted my pills and did various tests etc. In the report he did not detail all my medical conditions or what pills I took for said conditions.

Obviously I spoke to the Benefits Advisor and she understood my frustrations, she spoke with another GP at the surgery who arranged for me to see him so we could discuss what was needed. After the appointment he wrote a full and frank report about my health as well as information about my medication. He also explained that whilst I do have Hidradenitis I am yet to have it officially diagnosed. My initial dermatology appointment was not until December 19th, several months away. This was report was then forwarded to the Tribunals Officer along with a personal statement written by myself in preparation for the forthcoming Tribunal.

In early October last year it was time for the Tribunal. I felt sick with worry because although I knew based on my health they would have to overturn the decision there was always the chance they could reject me again. The panel comprised of 4 different people, people who did not know me or have any part in my clinical needs. There was also a man from the DWP there to assist with the decision making and answer any questions I may have. I felt like I had not been in there all that long. I answered their questions fully and frankly, and they in turn answered mine where applicable. I left the room for them to make the decision, they did not take long to recall me. I was told that they were overturning the decision based on the medical evidence received by the board and that once the HS has been officially diagnosed I should consider having a review done as it does have an impact on a personal care need as well as mobility. My health has deteriorated since said Tribunal and I will be sorting out getting claim reassessed in due course, now am with a new GP it shall be far easier to obtain a full and frank medical report. In fact a medical report is being written now due to my need to get assistance at home. I was going to put a copy up but on the advice of a good friend I will not do so as I do not wish certain things being seen.

Some people seem to think HS is a condition that will go away on it’s own accord. Sadly it is not like that, it would be nice if it did but as I face my 4th operation later this week I shall be grateful if any budding scientists find a cure for me and many others with this horrific disease.

I am a stage 3 which means it can only get worse for me, not all HS sufferers reach stage 3. The majority will remain at stage 2 for a long time. I am facing multiple operations and skin grafts next year.  I am also due to, as mentioned before, have another op this week. I have developed 2 abscesses – one on the right hand side of groin and the other is in my armpit. They are incredibly painful and swollen, the armpit one has pressed on my lymph nodes for well over a week causing me to feel very unwell – like I was coming down with a cold. Needless to say I shall be posting pics to raise awareness of this disease and to also show some people it is not just a small little spot that can be ignored.

I would suggest anyone who knows the disease well or who doesn’t to google hidradenitis suppurativa and look at the pictures available online.

For now, take care and keep safe. I will blog again soon!

Marmite x