Does anyone know about Intensive Inpatient Therapy for Primary Lymphoedema?

[Aliphant1964]

Hi - I am seeing the Lymphoedema Clinical Nurse Specialist on Monday and I want to ask about being admitted to hospital for intensive bandaging a this has been suggested by a medical student who was shadowing my GP a few weeks ago. I live in Medway, Kent and have tried to research local services and the criteria to see if I 'qualify' but to no avail. If anyone has any information I would be grateful as I always feel a little intimidated when I see the Nurse as she doesn't think I am being compliant (because I couldn't get on with the Support Stockings or Farrow Wrap very well!)

[Hidden]

I don't know about inpatient services but I would assume that any inpatient bandaging treatment would require you to agree to continue with compression therapy of some sort after you're out of the hospital. Otherwise any gains they make will be quickly lost.

Why couldn't you get on with the stockings? If it's that you need someone to help you get them on and off then you could ask about care packages to get a care worker in to help change them every day or something? If it's some other reason that you can't wear the stockings then I think it's unlikely that anyone will give you inpatient treatment until they can work out a way that you can continue to maintain things at home as inpatient treatment is expensive and any gains they make will be lost quickly if you can't continue at home.

Sorry if I sound a bit negative. I don't mean to be but I am trying to be realistic and as a health professional I know how they look at these things.

[Aliphant1964 in reply to Hidden]

Thanks for replying Faethe - I appreciate you taking the time to answer my query.

I probably should of made myself clearer but I usually waffle on so much and I was trying to be brief for a change!

I live alone and I have only recently won an appeal to get DLA and I have just started paying a friend to act as my carer. At the moment she just takes me shopping and to medical appointments and helps me with the things I cannot do around my flat. However, she has said she would be willing to try and help me with my Support Stockings and/or Farrow Wrap whenever I can get my legs down enough to attempt putting them on - and of course when my legs are dry. Understandably she doesn't want to deal with leaking lymph fluid or any open wounds.

Up until now I haven't been able to manage on my own. I have been unable to get the stockings on because I am so big and I can't reach both hands down to my ankles/feet at the same time - I can manage slightly better with the Farrow Wrap but neither method of compression is particularly successful for me.

The last time I got down into stockings was about 2-3 weeks ago - and they are great in that they compress the fluid in my feet and they reduce in size and swelling significantly, however, after just 4 days of wearing them the Nurses commented how huge my legs had got in comparison to when they were bandaging me (using Profore 1 and 2 and reversing the bandaging up the leg from ankle to knee). The Farrow Wrap compresses the legs better than the stockings but doesn't help my ankles or feet and I always have a 'ring doughnut' effect around my ankles where there is always a puffy layer of skin.

The bandaging and the Farrow Wrap quickly loosen and fall down as the compression works - and so I either have to be re-bandaged (on average) every other day or I need to try and get someone to re-do the Farrow Wrap for me.

I have been aware of the intensive bandaging option for a long time - and I have exactly the same concerns that you have raised - and I do worry about all the time and effort (and money) involved in treating me only for the problem to come straight back again - but my District Nurses seem to think intensive bandaging may get me down to a more controllable and manageable level - and they keep telling me that it is not a viable solution to keep bandaging me for the foreseeable future and it is not really within their remit to keep treating me unless I have open wounds.

I don't know what the solution is - and I have a feeling my Lymphoedema Clinical Nurse Specialist won't want to refer me for intensive treatment as I have heard 'off the record' that she feels she has already 'done everything she can for me' insofar as she has provided Support Stockings, Farrow Wraps and Kerraped boots - and if I haven't been able to manage the Lymphoedema myself there are no other options left to try.

Sorry - maybe I should of stuck to the shorter version!

[Hidden]

Your long answer was very helpful and gives a much better idea of the full picture.

With all that info, it does sound like intensive bandaging might be good to get your legs down, then perhaps the highest class of stockings or wraps that you can tolerate? Changed on alternate days by the nurse at your GP practice if you can't manage with your carer to do it? Could you get to the surgery regularly for that?

I hope you are able to get more treatment. It doesn't sound like your nurse specialist is a very good one.

Good luck and best wishes

[Aliphant1964 in reply to Hidden]

Thanks Faethe - this gives me slightly more confidence for my appointment on Monday!

I am still quite nervous as I always feel I have to justify myself to medical professionals and I do feel guilty for wasting peoples' time if they have done their best to treat me and I haven't 'behaved' and produced the desired effect!

The other aspect of intensive inpatient treatment is I would inevitably only be eating what I am given - which would be perfect for me as I always tell medical professionals if it were at all possible I would love to have a tachograph fitted to my stomach so I could PROVE what I eat, when I eat and how much I eat - because nobody ever believes me when I say I DO have willpower and I DO have self-control and I am NOT stuffing my face with cakes, crisps, chocolate, biscuits, pies and chips 24-7!

I have been trying to lose weight since the start of the year but being more or less housebound and not able to exercise I don't burn off any calories, so even though I am following the Slimming World Extra Easy plan I just don't seem to be able to lose weight consistently - and if I am going to be accepted for bariatric surgery (which I have finally agreed to be referred for after several years of saying NO - I don't need it and I can diet without surgical intervention) I know I need to show I am capable of losing some weight on my own.

So, the inpatient treatment would be a way of hopefully killing two birds with one stone - I would have my diet and food intake monitored and be bandaged daily - so hopefully at the end of it I would be able to manage better with stockings etc.

It was also helpful to know my GP Practice Nurses might be able to help with the stockings - my carer could drive me to the surgery - but I am not sure they would agree to do this for me! Still, I can but ask!

Thanks again for replying Faethe - I really appreciate your advice and information.

Kind regards

Alison

[Hidden]

I'm glad that you seem more positive about things now.

If your legs have significantly increased in size in the last 2 weeks then they should be able to do the reverse, so I hope you get the intensive bandaging and that it does what you need.

It sounds like you've got the right idea trying to deal with your weight and also with the lymphoedema as I'm sure they will be linked to each other (one preventing you exercising, the other preventing you putting on your compression stockings - neither condition is helping the other).

I can't promise that your GP practice nurses will be able to help with your stockings but I think it falls more into their role than it does with the community nurses. Perhaps they might be able to do it for a while and also train your friend/carer so that she'll be able to help you with them at home. that way you don't need to make your way to the surgery so often.

I really hope that you get the intensive bandaging and that you can maintain compression when you get home to get some real sustainable results.

Good luck

[norberte]

hi angela

just a note about paid carers - your friend sound v helpful but you really need someone who can help you with stockings / bandaging whatever state your legs are in

not sure why they couldn't put latex / vinyl gloves on to start with, before the good old washing up gloves to even out the stockings?

you may decide to approach a care agency - your local social services adult care team will have a list - & pay someone to come & help you with your legs while your friend does the other stuff

& it might be worth asking for an assessment from the adult care team anyway - they can help in various ways including paying for more hours of care support

[Aliphant1964]

Thanks for your reply Norberte.

I had my Lymphoedema Clinic appointment on Monday and I have been measured for knee to toe zip-up stockings. The Clinical Nurse Specialist said she wouldn't consider referring me for intensive inpatient treatment at the moment because I have not given the stockings a good enough try - and obviously I would be expected to wear stockings after any intensive treatment - so it is pointless me being put forward for this - which I do understand.

My friend is happy to help me with the stockings when they arrive, and she has helped me with Farrow Wrap before - the only thing she isn't comfortable doing is bandaging me or creaming my legs - particularly if I have any open areas or ulcers - and obviously if I do have broken skin I should be seen by a District Nurse anyway.

The Clinical Nurse Specialist advised me to massage my thighs as the skin is thickening and 'bubbling' there too - but I find this difficult so I may well have to consider finding a more 'qualified' carer, but I will have to think about this very carefully as I can only afford to pay someone out of the £77.00 a week DLA I get. I give my friend £8.00 an hour to take me to medical appointments and shopping etc but inevitably it would cost more to pay a Carer through an Agency.

I had a letter today informing me that due to the economic climate I will no longer be entitled to claim full Council Tax benefit - so finding 25% of the total charge will be another expense for me to consider and I am looking into getting an adapted car under the Motability scheme and if I do, then I will lose the £55.00 a week from the DLA.

It is frustrating because I would dearly love to be able to drive and get some level of independence back again, but on the other hand, perhaps I would be better off financially if I use the money to pay my friend to drive me to appointments etc.

I have had Social Services out to assess me but other than giving me a rollator to help with walking and a seat to go in the bath, plus fitting hand rails outside my door they didn't make any other suggestions and they certainly didn't mention any extra money to pay for support - so again, that will be something else I will have to look into.

Thanks again for your advice,

Alison