I am looking for a Prof/Dr Mortimer who has to do with... - LSN
I am looking for a Prof/Dr Mortimer who has to do with Lymphoedema in the UK - which hospital, telephone number or email address please!
TRY THE GOOGLE SEARCH . . .
royalmarsden.nhs.uk/consult...
Christo, thank you so much for the info.......very greatfull.
I think you are looking for Dr Peter Mortimer who is based at The Royal Marsden Hospital, London
Professor Mortimer works at St George's, London and he is honestly the best doctor you could ever wish to have, he's fab 
Ive been to see Prof Mortimer this yr, i was referred in FEB & got an appoinment in SEPT
I went to see him in ST Georges in Tooting & ive had to FIGHT for 7 years to see him( lymphodema nurse was a dragon she's since retired & i get an appointment yeay)
Im not sure about his private clinic but it may be The Royal Marsden.
Ive primary lymhodema in my right leg quite bad now & even Prof Mortimer agreed had he seen me sooner & the Lymphodema nurse been more accomodating my leg woukdnt be in the state its in now! So Please guys fight your corner, especially now when they are so cutting back! We have as much right to treatment as anyone else! And yes it is & can be dibilitating & may be irreversable if left far too long! Im only 41 & feel that i look 71!!!
Hope this helps xx good luck x
Thanks so mutch for your advise.......highly appreciated!
I fought to get a diagnosis, but saw him pretty quickly after that, but only after a nose to nose row with my GP (who I get on very well with now - in fact he asks me for lympho advice!).
You are right, getting to see the specialist and managing it is key to future quality of health and life, fight your corner and get that referral!
Prof Mortimers private clinic is held at Parkside Hospital In Wimbledon. Unfortunately Lymphoedema services are stretched to the max with St. Georges being the biggest and taking people from the whole of the UK inc Ireland where their condition cannot be managed at home, even the St Georges clinic is cutting back as funding is reduced.
Don't forget that there is a register of private therapists at MLDuk.org.uk where you will be able to access MLD and bandaging , compression and be taught to self help..yes it has to be paid for but it can be used to top up your hospital/hospice appointments and it is money well spent.
I agree with all the positive comments about Professor Mortimer. He is the UK medical expert on lymphoedema and I am sure he will do whatever he can to help you. The biggest problem that many of us have is actually getting the referrals to the right people. It seems to me that the very senior clinicians do want to help us - when we get to seem them! So yes we must keep on fighting, especially with the forthcoming cuts to services in the NHS. Good luck.
My 14 month old daughter got referred to see prof Mortimer in st George's in London and he has agreed to keep her on his clinic and see her every 4 months as we live in Northern Ireland and our clinicians here have NEVER seen or treated a baby with primary lymphoedema.when we had out 1st apt which took almost 3 hours he didn't rush, made us feel very comfortable and took the time to speak to Mary Kate and play with her where others treated her like an object. Prof Mortimer is a legend to say the least and his team at st George's are fantastic they've given us excellent support us confirming milroys disease, treatment plan and genetic advice on the baby I'm carrying at the minute! I know there is a lot if cut backs but if you need his help I doubt he is the type if dr to turn u away good luck!!
Hello. I'd love to get in touching you as my child has been diagnosed with milroys disease. Xx
Professor Mortimer is Patron of Lipoedema UK, if you send us an email to info@lipoedema.co.uk we can forward it to him.
i wish we all lived in an area with such expertese and support i feel quite aLONE WITH IT ALL AND IT COST ME MY NURSING CAREER.
ME TOO I feel extremely alone with this condition having found a brilliant Lymphodema Nurse which is a must to all of us all I do not know how I coped for over 40yrs when the GP said there was nothing they could do until one day I asked well what can I do the look on his face it was a picture then thats when I was referred and got the help I needed but it was a long hard struggle because I didn't have any treatment on NHS until 2010 I have suffered and struggled with my life. Now having full stockings and NHS Boots it does help but does not cure the condition it is down to us at the end of the day to control the situation so I rest as much as possible with both legs elevated above the waist for the fluid to drain also use Cir-Aid Straps which help with poor circulation and replaces the bandages. So I have been told many a time as there is no cure although not life threatening we must look after ourselves and this takes a lot of our personal time so the GP's NHS and the Government need to be more supportive and understanding of our long term chronic condition.
If it was not for this site where else could we air our views and off load our views and opionions
Hear, hear. My GP has told me that there is nothing that can be done, I have asked and asked and asked, especially after seeing this wonderful website. I am going to print off some of the info on here and shove it under his nose for him to study! Perhaps then I might get some proper treatment.
Oooh that felt better to off load that lol
Hi I have lipodema and lymphodema could you point me in the direction of some more information on lipodema. I have just had liposuction to try and improve things
Does this also apply to Lymphoedema? What sort of money does it cost to see him privately if a person just can't get anywhere with the GP/State system?
I had my first bout of Cellulitis in 1988, and the damage was done, recurrent bouts later and no help or information from Doctors whose only reply was, loose weight!
I found out about Professor Mortimer a couple of years ago but had no money to pursue it, still haven't but must try if only for some sort of closure on a very painful condition. Last bout two months ago has left me with aching pain on the bone in affected leg and pain down back of leg.Finally got refered to Lymphoedema nurse at local hospital who said she would put in for referal and I would have a copy of her letter in a couple of weeks , that was two months ago and nothing yet so assume as usual they aren't doing anything but have an appointment with her in May. But just want to have some extra knowledge this time round.I am just so tired of hurting with no answers from the professionals.Thanks for any help.
Cost me a couple of hundred quid, totally worth it.
i have waited two years to see prof mortimer saw privately at parkside hospital wimbledon what a lovely man he has sent me for further tests at st georges tooting, he also works at royal marsden hospital sutton
Hi everyone im just wondering what does proffessor mortimer do that a lot of the lymphodema clinics dont. I was very lucky to be referred to the clinic in Leed run by Jaqueline Todd who is a fantastic nursing consultant. They provide treatment and advice and have now set up a clinic for children with lymphodema. I am very lucky that my children at the minute are showing no signs.
I know it is hard for us primary lymphies to get treatment as the main funding comes from macmillan for those who have become symptomatic after cancer. I saw a nurse briefly when i was younger when little was known about lymphodema only to find them not accept primary anymore. I hope that more clinics for both will happen but its for us all to complain to local care trusts for them to realise it could save money in the long term.
I have an appointment for the lymphedema clinic in St. Georges in March. I have waited for this appointment since August. Just wonder if I will even get to see Prof. Mortimer. Were you happier at this clinic than your usual one? I am really putting my hopes in getting the help I desperately need. Were you happy?
Prof Mortimer is indeed a wonderful clinician. He is training up another doctor too, I can't think of her name right now but she is also excellent and the more the merrier of course. But what we really need are good local services. My son has primary lymphoedema and it has always been difficult to access services, either because they don't do primary or they don't do paediatric. Luckily the service at Aylesbury hospice agreed to see him and they supplied us with garments for a few years (still do but they are now on prescription through our GP). He also gets occasional MLD. We have paid privately (twice) for intensive MLD after unsuccessful applications to the PCT for funding.
Just to get back to the original question you can ask for a private referral to see Proff M and indeed as already identified his private clinic is held in Wimbledon. I have seen him twice there. My GP referred me once and my Nurse once but that was because I was able to afford private consultations as I had a job then, There is a VERY long waiting list but for me it was very worthwhile. NHS referrals have to be made by a Consultant not by GP or S Nurse.
To answer the question about Lipoedema LSN has it's own very good leaflet and there will be a Lipoedema Day in May.. information and a survey about Lipoedema on their website.
(Twas the good Proff who diagnosed my Lipoedema thus complicating my Lymphoedema)
oh dear, I had not realised that NHS referrals have to be made by a Consultant not GP or S. Nurse. Is this just to see Prof. Mortimer? I have a good mind to take photographs of my legs send them off to Prof. Mortimer with a begging letter!
It is because I live in the S E that I am able to see The Proff. There are other wonderful people out there but not too many. Both of my B C Consultants have been very supportive about getting me to see Proff M and I think that might be a good place for you to start. I don't know where you live but no doubt someone on the board will know where you'd get the best help available. The Proff doesn't ration his appts to be mean, he is just so very very busy. I believe he was instrumental in getting LSN launched amongst many other things and he is passionate about improving the care we get. He works out of the Royal Marsden where he is researching the spread of breast cancer through the Lymphatic system as well as the work he does from St George's for people like me. Hope that is helpful but probably not. If you have a S N then he/ she can make you a private appt but to be seen on the NHS you will need a Consutant's referral.
He is a Consultant at the Royal Marsden in London, specialising in Lymphoedema, oops just saw reply below with url. You can also read articles of his on the LSN website.(Lymphoedema Support Network).
Reading all these comments has brought it all back to me about my recent appointment at St George's Hospital in Tooting ..... Firstly this is my background history: The back of both my legs broke down into open ulcers over Christmas 2011. From January 2012 the ulcers were treated by the nurses at my GP practice and then the staff at a local wound clinic. I was referred to the Lymphoedema Clinic in Rainham, Kent in March 2012 and the Lymphoedema Clinical Nurse Specialist formally diagnosed me with Primary Lymphoedemamy Praecox in both legs. I had intensive bandaging for a couple of weeks until Easter 2012 when the Lymphoedema Nurse went on holiday and passed me on to the Community Nurses at my local Healthy Living Centre in Medway. I was measured for Farrow Wrap Classic - foot, lower leg and thigh pieces and was discharged once my wounds had dried up. At the time I was 48 years old - and I live alone and am single with no children or anyone else to help me. I am morbidly obese, type two diabetic, I suffer from kidney stones, sleep aponea and Clinical Depression and in November 2009 I had a DVT in my leg which became a Pulmonary Embolism - blood clot - in my lung and then severe depression so I was off work for 9 months, then in early 2011 I was getting repeated Urinary Tract Infections and in June 2011 I had to have an operation to remove a large kidney stone and was off work for a total of 6 months. After that I was sacked from my job in September 2011 due to excessive sick leave - and went into deep depression and barely left my flat for 3 months - which is probably why the fluid built up in my legs and they became ulcerated. After I was left to manage the farrow wrap on my own - which I couldn't do - the fluid came back and my legs got much bigger again. One of the Community Nurses saw me at the HLC a few months later when I was having a warfarin blood test and I burst into tears - and so since Summer 2012 I have been back under the care of the District Nurses and they have been bandaging my legs three times a week ever since then. The Lymphoedema Nurse refused several requests from myself and the District Nurses to be referred to Professor Mortimer because I had been 'non-compliant' with Farrow Wrap and not demonstrated my commitment to following my care plan ..... not because I wasn't willing, but because I was physically unable to do so! Since then Lymphoedema Nurses from other services have assessed me and I have tried various stockings and garments - but the tension has either been too tight and caused pressure sores, or too weak and my legs have 're-filled'. Thanks to the superb care from the Community Nurses I have been seen by a rep from Actico who is a trained Lymphoedema Nurse and they worked together to get me admitted to a local rehab hospital for 3 weeks in November 2013 where I had daily toe to thigh bandaging and total bed rest. My legs formed a more normal shape and size and the treatment dramatically improved my condition - BUT the stockings I was measured for were the wrong grade and my legs refilled again - so they re-measured and re-ordered a stronger grade garment - but my legs - particularly thighs - are too big and I haven't been able to get into them! However, because I 'complied' with the 3 weeks of inpatient care, the latest Lymphoedema Nurse agreed to refer me to Professor Mortimer! As someone who has been 'fat' since I was about 10 years old, I have spent the last 40 years on various diets and healthy eating plans, (I was 50 this week - April 15th) - but since my mobility has deteriorated due to the Lymphoedema, I am no longer able to burn off enough calories in order to lose a significant amount of weight, so after several years of saying NO I finally gave in and agreed to be referred for bariatric - weight loss - surgery, and in January I was accepted for a gastric bypass operation BUT, new NHS guidelines now stipulate anyone undergoing weight-loss surgery MUST undergo 6 or 12 months Tier 3 preparation for surgery - to reduce the number of people re-gaining weight after surgery because they haven't prepared properly for the psychological aspects of life after the operation. However, in MEDWAY where I live - which is in the county of Kent - there is absolutely no Tier 3 provision, but there is an already established Tier 3 Service in KENT - but they cannot accept me as a patient as there is no funding agreement in place between Medway CCG - Clinical Commissioning Group - and Kent and Medway NHS Trust - so unless my CCG agree to fund my treatment, I cannot have my gastric bypass - which would reduce my weight and more importantly, the weight pressing on the lymph nodes in my groin - which don't work properly to drain the fluid in my legs! I have asked my GP to apply for funding - but have not heard anything yet. In February I became very depressed again and in March I was having suicidal thoughts and looking up places online to buy 'suicide pills' - so I was referred to the Mental Health Crisis Team and I had a home visit from a psychiatrist who changed my anti depressants. I was discharged to the Community Mental Health Team at the start of this month and on Tuesday 2nd of April I finally travelled to London for my appointment with Professor Mortimer!!! YAAAY!!! ....... I was seen by a young, blonde, very tall and slim Australian Doctor called Bonnie - who I have since found out is a Lymohoedema Registrar. A nurse unban aged me and Bonnie asked about my medical history and what medication I take .... which I lots! She examined my legs and said they would probably need to look at getting me admitted for inpatient treatment - but she needed to pop out and discuss it with her colleagues! About 10 minutes later she came back and hinted that inpatient treatment would be difficult due to funding - and then said she would write to my GP and discharge me until I had lost weight - and they might be able to see about treatment after that - but I would have to be re-referred! I immediately burst into tears and said I had had a weight problem for 40 years and with no bariatric surgery on the horizon I was never going to be able to lose enough weight for them to consider me 'suitable' for treatment! She said there was nothing they could do for me as any treatment would not be successful until I was slim - I wish I had had the presence of mind to point out the inpatient treatment I had been given locally was extremely beneficial - but I was too distressed. She had already asked if I had ever had my legs/veins scanned and I said NO, but should I have it done? - and she said there was no point because it would only show where the blockages are - and it's obvious I have a problem because of the size of my legs! She asked who diagnosed me with Primary Lymphoedema - and I said a Lymphoedema Clinical Nurse Specialist - and she just shook her head and said NO - I don't think it's Primary - it's just weight-related. I said but my legs have always been big - and even when I have lost 2 or 3 stone my legs have still remained very swollen. I said it was my understanding that if you are born with Lymphoedema, often it doesn't become prevalent until puberty - and that is when it became noticeable that I was bigger than other 10 year olds - I started my periods aged 11 before I EFT Primary School. She just dismissed this and went to her desk and did some typing whilst I waited for someone to come and re-bandage me .... all the time still crying. I was there for a few hours but my consultation was only about 15-20 minutes and I feel it was just a 'box ticking exercise' - they got me in, questioned me, made a judgement and discharged me - in effect 'writing me off' and getting me off their books as soon as possible. Other than prescribing me a prophelactic anti biotic to prevent recurrent cellulitis, it was a total waste of time. It was a very upsetting experience for me and now my local Lymphoedema Nurse - who has only been 'in post' a few months - wants to measure for farrow wraps for the third time - and get me discharged from the District Nurses so I can 'self manage' at home ...... I feel totally defeated, depressed and denegrated and I am again back to a point of stalemate .... and I am again left wondering what the point of living is if all I have to look forward to is years of isolation - I had to give up driving 2 years ago - and a future with no real quality of life .... and I still find myself trawling the internet looking for pills that would end my life painlessly - and permanently.
WOW, thats sad. Hope it had some good bits, your life. I too have primary lymphoedema, I too am obese, I too get cellulitis regularly, (which is shit isn't it), i too have diabetes. Which means that like you I am predisposed to Cellulitis, as we have 3 out of the 5 criterea, obese, diabetes, lymphodema, we can only try to change 1 of them and thats our weight. So I tried a group called More-Life which is newish and some counties are pushing it, such as Oxfordshire. You need to get a refural from your GP if its avaialable in your area. My 2nd point is have you had any councilling for you r depression. It will be tough. But to be honest your life does not sound great at the moment and whats the worst that can happen that hasn't already? Like you its your life, so you have to choose. You either try to loose weight, get help for loosing that weight, help yourself or NOT. And no its not going to be easy. Also 1 step at a time. I find I can only plan 3 days of activity and monitoring my food, and don't get me started on eating less or no sweets, I am just terrible for eating them.
//I do mean well but it may not seem so.
How are you now and what happened?
Prof Mortimer and his team are found at St George's Hospital in Tooting Bec, South London. Telephone no. 0208 725 4946. It is an NHS Hospital and you can be referred by your Specialist/Consultant. He and his colleague Dr. Kristina Gordon, also see people privately at Parkside Hospital, Wimbledon, and your GP can refer you for that. I started off privately to speed things up, then asked to be transferred to the NHS.
Hi
This is an old post but if your like myself and just finding it, I would like to add a few lines.
My daughter has a primary lymphodema and although, I do not feel the troubles of having this condition I can deeply emphasis. She has had 6 hospital in stay, bouts of cellulitis in the previous year.Dr Chritina Gordon who works alongside Prof Mortimer has advised when the infection starts again,she would benifit from 6 weeks of iv anti biotics not two.so hopefully my local hospital will adhere to this advice.
I would just like to add for those of you up north there is a doctor Vaughan Keely at Derbyshire hospital. The lymphoedema therapist my daughter see recommends him highly. I think this link is also worth a look.
nhs.uk/NHSEngland/AboutNHSs...
It may also worth asking your gp what your rights are under the Community Care Act in accessing specialist services that are not in your area.
Lastly there was a lady posted about contacting Prof Mortimer her self,that is what I did.Although I'm going back 15 or so years ago we were lucky enough his secretary passed on the information.
I send you all love and light
Bw.
S
Hello, Professor Peter Mortimer was based at St Georges Hospital when i met him, he is a professor of dermatoligy.
Regards. Keith
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