My Primary Lymphedema & Angiosarcoma (Part 2)

July 2012 – I contacted the Hull Daily Mail (Our local paper) to see if they could put an article together to promote awarness of Lymphedema & Angiosacroma. We also discussed that I was having a meeting with Karl Turner (MP) on the 28th July 2012 and she told me to let her know how the meeting went and she would put something together for the papers.

28th July 2012 – We had a meeting with our local MP, Karl Turner to ask the questions why there is no help in Hull for Primary Lymphedema suffers but there is for Secondary Lymphedema suffers.

Other things discussed were concerns for other Primary Lymphedema suffers who didn’t even know about the help from Leeds, (St. Jimmy’s) my personal case and lack of medical support over the years.

Karl said he would arrange a meeting with the head of the NHS and would be in touch with us shortly.

30th August 2012 – I went to see a Consultant Plastic & Reconstructive Surgeon at the Minor Surgery Suite at Castle Hill. When we saw him he said that he had a meeting with a Consultant Plastic Surgeon at dinnertime to discuss about my Biopsy Results. The Consultant Plastic & Reconstructive Surgeon informed us that I had a rare aggressive cancer called Angiosarcoma. People with long standing Lymphedema can get this form of cancer, but it is rare and usually only happens when they have had some sort of radiation or chemical treatment but I neither!

I was informed that I would be having an MIR scan and CT Scan on Wednesday 5th September 2012, then they will know more about how to deal with the cancer. The Consultant Plastic & Reconstructive Surgeon told us that it needed to be cut out as Chemotherapy & Radiotherapy won’t touch it! I mentioned about cutting my leg off in an effort to save my life and he said they would take it one step at a time and see if they can cut out the affected area, if that fails then they would look at cutting the leg off below the kneecap and if that failed they would cut the leg off above the kneecap. It all depended on what the scan shows and how far the cancer has spread!

31st August 2012 – 1.00pm – Karl Turner our local MP arranged a meeting with the NHS at the Maltings in Hull to discuss about….. Why there is no help for Primary Lymphedema suffers & why do patients have to go all the way to Leeds to see a Lymphedema Nurse when there is one in Hull who they can’t see because they only deal with Secondary Lymphedema brought on by Cancer. We know why that is……… because they are sponsored by Cancer Research!

Anyway, at the meeting was Karl Turner (MP), one of his associates, Dr Tony Banerjee (NHS Hull Clinical Commissioning Group), Emma Latimer (Director of Partnerships and a Co-opted Member of the Board)

Karl started off by thanking Dr Banerjee for allowing us to have this meeting and asked me to explain about my problem & concerns………. See A Brief History Of My Primary Lymphedema (Part 1 & 2) TOP LEFT OF PAGE

Dr Bannerjee then came in and said “From our point of view I’m very sorry it has come to this stage and for all the problems you have had along the way but at the same time I would like to thank you for bringing it to our attention. It has been on our list of priorities for quite a while now and the NHS is going through a big restructure. On the back of your letter we have now also put in place a business case were we are going to start up a Lymphedema Clinic locally and we are really hopeful to get that up and running by the end of the year.”

Dr Banerjee then passed across to Emma Latimer…….. “I apologise for what you have been going through and the amount of time you have had to wait to find out your results, it is awful but if I can just talk about the Lymphedema Department first. Lymphedema was on the list of priorities from the PCT responsible for this and since we got your letter in I started looking into it and we now have a business case and had a meeting earlier this week about all of this and there is going to be a Lymphedema Clinic locally in Hull to deal with all cases of Lymphedema. We’re hoping that it will be in place probably by the end of the year. We may need to phase it in slowly because we have got some work to do as staff will need training about Lymphedema care. We will be dealing with all forms of Lymphedema, Non-Cancerous & Cancer forms of the illness.”

Dr Banerjee then came back in and said “It was unsatisfactory that you and other’s like you had to travel all the way to Leeds for treatment!” I interrupted “I agree it’s a very long day, especially when you are doing it daily for two weeks. It’s two hours on a bus to Leeds, then you are sat waiting for your appointment and an hours worth of treatment, then your sat around waiting for the two hour bus ride back home! It’s bad enough for me, but what about the elderly, or the ones waiting for Ambulances to take them back and fourth or worse still what about the ones that don’t even know about the help in Leeds!” Dr Banerjee replied “I couldn’t agree more and this is why we need local Lymphedema care. Is there anything you would like to see from your perspective concerning Lymphedema?” I replied “Basically I would like to see somewhere were there is information about Primary Lymphedema, I mean, if I knew, I’m talking years ago, when I saw Sue Mann there was help, leaflets, people who you could talk too, people who could understand your problems. If there was an actual place to go and see someone who knew about Lymphedema, I think things would be different and I wouldn’t be in the place I am now.”

Dr Banerjee came back with “I think it is a much bigger problem then people think! With regards to Lymphedema I think there is definitely work we can do with GP’s to make them more aware of problems with a publicity campaign.” I agreed!

Dr Banerjee said “The GP’s need to be made more aware of Lymphedema and the problems surrounding it. There also needs to be more publicity and the doctors & nurses need more training & education to deal with the problems surrounding the lymphatic system. If there was any type of forum/case study we could set up would you be interested in coming to speak to us?” I replied “Yes” Dr Banerjee continued “It’s much more hard hitting when someone is there, like a face to put to the case!”

Dr Banerjee then asked “Have you heard back from the Biopsy results yet?” I replied “Yes, I have found out I have Angiosarcoma, a rare aggressive form of cancer!” Dr Banerjee asked “Have they said to you what the plan is now? About imaging going to take place?” I replied “Well they phoned up this morning and I have a MIR scan on the 5th September and I’m supposed to be having a CT scan too, but I don’t have a date for that yet, but I was told that I would be having them on the same day! With my Lymphedema leg, they were talking about skin grafts, but it is unknown if they will take as I am prone to infections so there was talk about amputation, it all depends on what the scans show.” Dr Banerjee commented “Now your in the system, one of the things about the NHS is that things do move quickly once you are in the system…..”

I then went on to explain about other faults with Lymphedema treatment “The stocking for Lymphedema is crucial really. I had to have a lady to come all the way down from Glasgow to measure and fit me a new surgical stocking as there is no one here in Hull to do it, so I think this is another thing you can add to your education and training case. I did help out too, as I was the model for a days training session at the Health Centre on Orchard Park. They took it in turns measuring me and asking questions as I was the guinea pig as usual, but I’m used to that. It was a shame it was that quick as there are that many measurements they have to do up and down the leg that it is a lot to take in for one days training!” Dr Banerjee replied “If you’d be willing, we can pass your details to those who would be running & providing the service and you could be involved with help and advice from a person who is actually suffering from Lymphedema. I mean we know how to treat Lymphedema, but coming from you…..” I interrupted “The set-up in Leeds was actually quite good. They had a shower, which was great when you had to have bandages on every day and couldn’t take them off until it was time to have the massage the very next day.”

I continued “The other problem for Lymphedema suffers is shoes! You get given two pairs of shoes were they put these soles on them that do not rot. It doesn’t seem to matter what the tops look like as long as the bottoms are fine. In this day and age, the shoes that they are making are really, really old fashioned. I mean, I like to wear Jesus Sandals, especially after treatment and during the summer because if you are having to wear a surgical stocking all the time like I do, you sweat like hell and so it is more hygienic to have an open sandal as opposed to a normal shoe. Now you are not allowed any type of sandal because it doesn’t give you support and it can cause blisters and people could sue them, so they say, but in my case although I need the back of my heels raising the Jesus Sandals are fine, but I cannot have them!!!” Emma Latimer replied “We can certainly look into that as part of this case to see what we can do, but I can’t promise anything but if we can do anything more moderny we will try and give patients the choice.”

Dr Banerjee said “I think another part of this problem is awareness and what we need to do is Health Promotion on the education side of things with doctors. We really need to sit down with you and have a talk at some point and get you involved with that.” I replied “That’s a good idea!” Emma Latimer said “When you have gotten over the next few weeks we will contact you.”

Karl Turner MP finished the meeting by saying “Something positive from it really. I know it is a difficult time for you obviously but with you lobbying me and Dr Banerjee it has certainly done the trick.” Dr Banerjee added “I think the complaint system is there to help improve our system and I know some people feel bad about using it, but I always encourage them to complain because if there is something wrong with the system, how will we know unless you tell us!”

Karl Turner MP thanked Dr Banerjee & Emma Latimer for allowing us to have the meeting and listening to what we had to say. While Dr Banerjee & Emma Latimer thanked Karl Turner MP & myself from bringing the problem to the NHS’s attention! Dr Banerjee finshed by saying “I just hope everything goes as good as it can for you Vicki.”

We thanked Karl for all of his help getting us this meeting and helping us make the difference.

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