My struggles to get a diagnosis and treatment – Anne

Scottish Parliament Cross Party Group on Women’s Health
Meeting on lipoedema – Tuesday 22nd January 2019

Convenor: Monica Lennon MSP
Speakers: Mr Alex Munnoch, leading surgeon who performs liposuction as a treatment for lipoedema.

Anne Williams, Nurse

Anne Henry, lipoedema sufferer

Left to right, Monica Lennon, Anne Williams and Anne presenting the case for NHS funded treatments

Anne Henry’s presentation on her personal experience

My name is Anne Henry, I am 47 years old and was diagnosed with Lipoedema in Aug 2017 around 30 years after I first noticed signs that my body wasn’t quite the same as other girls the same age.

Within those 30 years I have visited my GP surgery on many, many occasions and seen lots of different GPs. When I mentioned that my legs were painful to touch and very swollen, I was always given the same standard answer “you need to lose weight and exercise more”. I moved to a new house in 1999 and joined a new surgery and thought this is my chance to maybe get someone to notice, however, I couldn’t have been more wrong. I asked for an appointment with a female GP as by this point I had started to feel very vulnerable and self-conscious about my growing legs. I explained to the GP that my legs were sore to touch and really disproportionate to my body and her reply after looking at one of my legs was simply “I don’t think the problem is your legs, I think it’s that you are grossly overweight” – she hadn’t even weighed me. I was left feeling that there was no point in trying; it must just be how my legs are meant to be.

I moved back to my original GP surgery a few years later and, from time to time, if I ever saw a new GP I would again try and get them to have a look at my legs, but the answer was always the same “Diet and exercise”. I had, over time, learned how to cover my body to hide my horrendous looking legs due to the reaction from people when they saw them. I had once been asked by my manager in a very busy office “What the hell is wrong with your legs” – that was the beginning of me never wearing skirts ever again. I was 22 at this point, newly married and totally ashamed of how I looked so I only ever wore wide leg long trousers from that day.

My life until I was diagnosed was just a conveyor belt of hiding my legs and making excuses to everyone. I was constantly being told “just eat less and exercise more” and until recent years that was what had done the most damage. No-one understood, and I could tell that they never believed me when I told them I never ate a lot and I did exercise whenever I could. Year after year I’ve had to watch while my friends confidently wore beautiful dresses to occasions while I covered up and looked frumpy. Lipoedema stole my self-confidence, my femininity and now it is rapidly stealing my mobility and my independence.

In the beginning of 2017, my mum and a friend both showed me a story in a magazine about a lady with Lipoedema and said they thought this was what I had.

I researched the condition and believed that I did have it and started to try and find out how to get diagnosed. I found out that Mr Munnoch was the only surgeon in Scotland who specialised in Lipoedema so in March 2017 I went armed with all the information to my GP.

I always asked to see a female GP and was given an appointment with a new female GP, she had never heard of Lipoedema and didn’t know if she could refer me, but she agreed to write to Mr Munnoch on my behalf.

I waited a couple of weeks and called Mr Munnoch’s secretary to ask about my referral, I was told the waiting time to get to see him was 9 months and I was on the list.

I did a little more research and was really keen to get a diagnosis I had private health care and asked if I could be seen privately by Anne Dancy in Birmingham, I got an appointment in August where she diagnosed me with stage 3 Lipoedema in both my legs and arms and explained that she could operate and remove all the lipoedema from my legs and arms and that it wouldn’t return. She also told me that I should ask my doctor to test my VitD Folic Acid and Calcium levels as Lipoedema patients are likely to be deficient in these. I did, and I was deficient and probably had been all my adult life.

The cost for the surgery would have been £45000.00. My private healthcare wouldn’t cover the cost as it was removal of “fat”. At first, I was excited and started to plan how I could pay for the surgery as I was so desperate to be rid of this awful condition.

My excitement soon turned to anger the more I thought about it, I had a genuine medical condition and was being exploited by a private clinic because they know how desperate people with this condition are.

I also have a daughter who could inherit this, so I started to reach out to my local MPs and MSPs who were very helpful, then my mum introduced me to Monica and her team (who have been amazing) which has led me here today.

I decided to wait for my appointment with Mr Munnoch. Whilst I was waiting on my appointment I continued to research and found out through various different FB sites that I should ask to be referred to my lymphoedema clinic where I could be measured for compression garments. I ask my GP to refer me and got my compression and lots of good advice from my lymphoedema nurse but again my GP had no clue she could or should refer me there. I then got my appointment with Mr Munnoch which was in January 2018, he agreed I was an ideal candidate for surgery he wrote to my GP and copied in NHS Lanarkshire who deal with all the funding for South Lanarkshire.

I went to see my GP about the funding request, she told me that she had been told off for referring me without speaking with NHS Lanarkshire first and seemed annoyed – I felt awkward in that appointment as it wasn’t my fault that she didn’t know she couldn’t refer me. She told me she would submit the funding request but couldn’t discuss any of the information with me and I wasn’t allowed to see the form.

Again I waited a couple of weeks and called to chase up the request NHS Lanarkshire told my MP they hadn’t received the request from my GP as of the 12/2 so I called the surgery to ask about it and was told by the receptionist that the information was confidential and they couldn’t discuss it with me ….. sigh …… I explained I didn’t want to discuss it I only wanted them to send another copy and was told that request would have to come from NHS Lanarkshire themselves!!!

The request was finally received by safehaven on the 27/2. Again, I waited but called my GP every week to ask about the response to the funding request each time speaking with the practice manager each time being told nothing had been received. I got so fed up being fobbed off, so I called Patient Affairs and asked about it and they told me they sent a response to my GP on the 5/4, I gave this information to the practice manager at my surgery.

On the 27/4 I got a call from the GP who was really apologetic and explained that the response had been sent to the wrong email for her and although the practice manager did receive it on the 5/4 she had assumed the GP would deal with it. The funding request had been rejected saying the patient should try conventional methods, I asked what the conventional methods were my GP said she didn’t know.

I was told I could appeal in 2 ways; the first being an informal appeal through my GP or a formal appeal again through my GP, but the outcome of the formal appeal would be final. I asked her to do the informal appeal and this was submitted on the 3/5.

I didn’t get a response to this until the 24/8 (almost 4 months later) but they had agreed to fund my operations. I was placed on the waiting list at Ninewells in Dundee and received a letter telling me I would have an appointment within 12 weeks by the 23/11. I had been unofficially told that the waiting list was around 6 months for the ops so had January / February in my mind. As the 23/11 approached I decided to call and get an idea of when I would get the letter. I was told that there were problems with the theatre lists and that Mr Munnoch hadn’t done any Lipoedema patients since July, but I was 5th on the list and they were hoping to get the theatre lists back in Jan so I would get a date then. To date I still haven’t received a date for my operation.

I could go on and on about the effects that this condition has had on my life both mentally and physically but one of the big ones for me is being denied fertility treatment for 3 years as I was clinically obese and needed my BMI to be lower in order to get the initial investigations to find out why I couldn’t get pregnant. It took me 3 years of starving myself to get just slightly under the guideline BMI. I now have a beautiful daughter but have suffered 4 miscarriages and often wonder if there is a link between this and the lipoedema. On a daily basis I have to make decisions as to what to do and when – for example, if I work a full day in my job I can’t do anything in the evening as my legs are so swollen and painful and if I am invited on a night out I have to know where we are going in advance as I can’t walk far and need a seat. I have to turn down lots of social events as I’m simply not able to go if there is no seating.

The process for me has been physically and mentally draining I started in March 2017 and we are now in January 2019 and I still don’t have a date for my operation.

GPs need to be trained to spot the signs and symptoms of lipoedema in order to get young woman the help needed in the early days as the early days is where the most mental damage is done. If I was Asthmatic, I would have access to a dedicated clinic; if I was diabetic I would have access to a dedicated clinic; if I had arthritis I would have access to a dedicated clinic. Lipoedema sufferers deserve a dedicated clinic with trained professionals caring for them and advising them. Lipoedema needs to stop be looked upon as a cosmetic nuisance it has robbed and is robbing thousands of women of their mobility and for this reason we absolutely need more surgeons in Scotland to reverse the years of neglect of patients with lipoedema.

See a BBC News video that covered this topic – click here.