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Cat asleep on Computer
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Monday, 6 February 2017

NHS WALES, I am asking for help, please

This is personal. Really personal. I am in a medical conundrum. I am on various medications for various medical conditions and it has become a vicious cycle.

Here is what it looks like:


And all of this can be reduced significantly or even wiped out completely, IF I can lose weight.

For the first time, I am struggling to do so. I have always been pretty active in spite of having been obese most of my life, but as I am now getting older, and with my ever growing health conditions, it is becoming more and more impossible.

This is what my feet have become. It's like walking on broken glass. My feet constantly split, bleed, itch, burn, and are extremely painful to even stand on. There are long periods I have to take off work because I simply can't walk. And when my hands are affected, I can't drive my car, I can't even wash my own hair because my hair cuts my hands. It hurts. Just the touch of fabric against my skin makes my skin crawl.

But why am I writing this here and revealing something so private in such a public way? Because I need help!

I see two consultants regularly, not to mention my own GP.  I see a dermatologist and a cardiologist. My GP monitors my blood tests that I must get every few weeks.

Here's the thing: My GP, my cardiologist, my dermatologist each recommended me for bariatric (weight loss) surgery. They feel very strongly about it and feel that it would "save my life".  My name was put forward to the NHS (National Health Service) and I was approved, "having met all the criteria to qualify".  However, when the application went to The Department of Nutrition and Dietetics, they said, "no." I didn't meet the criteria as outlined.

At one point, I actually received a letter from a bariatric specialist in Wrexham, confirming a consultation appointment.  I excitedly rang to make an appointment only to be told, "oops - this was a mistake", and I "wasn't meant to receive this letter."  What a crushing disappointment that was!

Here is the copy of the letter that I sent - which I NEVER received a response from but my GP did.



Department of Nutrition and Dietetics


To whom it may concern/Nicci Evans


Re: Mrs Melinda Gardner

I have been asked by my GP, Dr Pierce at Berllan Surgery, in Denbigh, to email you regarding your decision for not proceeding with my application for suitability of NHS funded bariatric surgery.  She has informed me that she has attempted to contact you on several occasions, and has requested that I try contacting you. 


You have made the decision based on being “unclear whether the patient meets the access criteria as set out by the Welsh Health Specialised Services Committee”.  Your decision was based on one point of the criteria which was:

d. The individual has received and complied with, an intensive weight management programme at a multi-disciplinary weight management clinic (level 2/3 of the All Wales Obesity Pathway) for at least 24-month duration, but has been unable to achieve and maintain a healthy weight.

“Although the patient has a history of addressing their obesity through conventional weight management as per point d above, no supporting evidence has been provided.”  

I have attended the community based healthy eating classes that were offered in Denbigh.  I was referred to these classes through my GP.  Although it was extremely difficult to attend the classes as they were only offered during the times I was supposed to be in work, I did manage to attend.  I also attended the cardio-work out classes that was offered at the town hall building across from the college that I worked at. Again, attending these courses was extremely difficult because it was offered at a time that I was at work; and since I teach, my attendance was irregular. 

I was offered access to the local leisure centre (membership number 009971).  Consistent attendance again was difficult because of work, because of illness and because of classes offered (which conflicted with my work schedule). 

I provided evidence from Ann Pimley, a Regional Representative of Weight-Watchers
 

To whom it may concern:

Mel Gardner attended my Weight-watchers meeting for over two years and was steadily losing weight and followed the plan really well.

Unfortunately, Mel had to give up due to ill health and was struggling to get into the meeting.

Kind regards

Ann Pimley, Weight-Watchers


It is extremely difficult to provide evidence of attendance or participation in weight loss management.  I don’t have evidence (although, I have no doubt that something must be on my GP records somewhere as I was referred to some of these programs through them). But I can’t provide you evidence of all the things I have participated in because there was never any reason for me to have gathered or kept evidence at the time – how was I to know that someday I might need to prove to you that I did participate so I can get the help that I desperately need?

In addition to various weight loss support programs, my GP prescribed Reductil, which helped greatly with weight loss until the side effects and discontinuance of the drug went into effect. 

My entire life changed dramatically when I developed atrial fibrillation.  No longer was I able to be physically active.  I went through three ablations and now I am on medication to lower blood pressure and to help maintain a lower, regular heart rate.  I have an abnormality on the back of my heart (extra vein), which my cardiologist, Dr Gupta (Liverpool) has said is a main contributor to the AF, but he only discovered it on my third ablation.  He has said to me that if I can lose weight, I could be removed from all medication. That is a goal that I have had for the last three years. 

It is difficult to lose weight when I am also being treated for plantar/palmer psoriasis. When I have a flair up (which I am currently having now), it can last anywhere from 8 to 12 weeks. I have had to miss a lot of work because of severe flair ups in the past. It can be so extreme that I cannot walk, drive a car, use my hands, do even the basic, simplest of things such as washing my hair (my hair cuts my hands).  Again, you received a letter from my consultant regarding how much better I could be if I could lose weight and the medication I could be removed from if I do. 

I think I have clearly met this criterion as outlined in the All Wales Obesity Pathway: 

General advice on healthy weight and lifestyle Pathway level 1
Diet and physical activity    Pathway level 2
Diet and physical activity; consider drugs  Pathway targeted level 2 and level 3




It is overwhelming. In the All Wales Obesity Pathway, it says, 

“Health Boards and Local Authorities need to assess how much obesity and overweight and the associated problems will cost them over time and the value of investment of energy and resources upstream in minimising this.  They need to recognise that the impact of changing priorities in tackling obesity will not be seen immediately, results will be long-term. This should not prevent action being taken now.”
 
I am writing to you in the hope that you will approve my medically needed weight-loss surgery. My height and weight are 5 ft, 6 in, 19 st 6  and my BMI is 43.9 (http://www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx).

As statistics show and as medical doctors, you must be aware that diet and exercise help, but as a long term resolution to permanent weight-loss only 5 percent of people succeed. I am well aware of the risks with this surgery, but I believe the risks of being severely obese outweigh the risks of surgery.

I am 58-years-old and have been overweight since I was born (I weighed 12lbs at birth). I have struggled with my weight my entire life; I have been on diets my whole life, having some success, but I would always gain the weight back I lost, plus more. I will list the diets I have been on, but never kept any documentation because I could not have known at the time that it might be required as evidence for my request. 
·    Weight Watchers
·    Diet Centre
·    Slim Fast
·    Slimming World
·    Behavioural Modification (to the extreme of snapping a rubber band on the inside wrist)
·    Atkins Diet
·    Cabbage soup diet 
·    Reductil (Sibutramine) pills, under my GP’s care 
·    Overeaters Anonymous
·    Hypnoses
·    Xenical (GP prescription)
·    Gym
·    Protein Power Diet
·    Smoothie Diet
·    Nutritionist/Dietician consult
·    Community support (healthy eating) classes
·    Many various healthy eating and diet books
·    Keeping a daily diary of food intake and exercise
·    Fitbit (walking tracker)

My GP and both Cardiologist and Dermatologist feel that I meet the criteria and have recommended me for this surgery.  The long-term effect of all the medications and constant supervision by my GP and consultants will cost the NHS a lot of money, not to mention the other co-morbidity problems that are starting to develop (such as diabetes and osteoarthritis).  

In addition to the looming onset of diabetes, I have had to struggle with a leaking bladder and have actually had incidents where I have wet myself. I have had treatment for PBS which has helped, but again, losing weight would certainly correct this most embarrassing problem. I teach and work with adult learners within the community and I find it difficult to deal with the embarrassment of smelling of urine. 

Recently, I attended a staff development activity which involved the whole of Grwp Llandrillo.  I was in a very large conference room and sat on a chair next to a few of my colleagues.  After about 15 minutes into the session, the chair collapsed and I fell to the floor. The chair was ruined and I was mortified and humiliated. 

My husband has been unemployed for over a year and I provide our only income. I need to continue to work and support my family. I have looked into the cost of bariatric surgery myself, but there is no way that I can provide for my family and afford it. 

Being severely obese puts a strain on everything I do. I cannot walk very far without getting out of breath, I cannot tie my shoes, I now worry about collapsing seats when I am in college, and I am not sure how I could possibly recover if I am teaching a class of learners in their place of employment and I accidentally wet myself.  I am embarrassed of what I look like and hardly recognise myself when I look in a mirror. 


I am not functioning to my full potential at work. I am always tired to the point of falling asleep at my desk. It takes me twice as long to do many things. I have no energy. I want to be more active and be able to do the things normal sized people do. I do not want to die. I know this surgery will be a life saver for me. I would hope that you would consider me on an individual basis (IPFR) as I really do feel I meet the criteria and demonstrate clinical exceptionality.  Please reconsider your decision and save my life.  Please. 


Thank you,

Melinda Gardner

Cc Dr Pierce

Yesterday, when I saw my GP, she showed me a number of email correspondences with disapproval, and approval, and going back and forth with the "left hand not knowing what the right hand is doing".

One comment was that I didn't meet the criteria because I haven't participated in two years of:
level 3: specialist multi-disciplinary team weight management services


Dr Pierce told me that they have no, "multi-disciplinary team weight management service". She did refer me to a dietician (which I have seen before).  

Regardless, the All Wales Obesity Pathway states that exceptions can be made if there is no multi-disciplinary team weight management services available in our area or through our surgery.  But, I was told that, "she should be considered as an exception to general policy on Evidence, Ethical and Economic grounds."

Please, I need some help and support. I am worried for my future and this option gives me hope. Can anyone help me? Please?

Please be aware, I am really opening myself up here and being very vulnerable with a very personal and private conundrum. I don't know what people in social media can do, but I do know that many voices can be heard. Thank you.



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