Health Unlocked is an excellent website Forum for those of us with Lymphoedema or Osteoporosis

Today, a subscriber asks where she and her husband should move to?  She wants to know which area has the best health service for those o us with Lymphoedema, and obviously where are the shortest waiting times!

Sadly, Lymphoedema treatment is very patchy, and can be impossible to find in some areas.  A decade ago the NHS obviously thought we, as a group, wouldn’t make too much fuss, and quietly decided to cut Lymphoedema services.  This meant experiencedLymphoedema Nurses were told to go elsewhere, re-train, etc. and were lost.

But Lymphoedema Support Network (LSN) says there are over 240,000 of us; as one of them I want to do my bit to publicise what is available, and perhaps shame hospital Trusts in providing better service.

The NHS says

“The recommended treatment for lymphoedema is decongestive lymphatic therapy (DLT). … specialised massage techniques – known as manual lymphatic drainage (MLD); this stimulates the flow of fluid in the lymphatic system and reduces swelling. …

And then makes it impossible to get MLD on the NHS;  instead you are offered compression garments.

In an NHS hospital you will be offered

  • advice about skin care
  • exercise
  • self-massage
  • fitting of a lymphedema garment – either a sleeve or stocking

But if you are unable to tolerate garments – itchy skin, limited strength in your arms, etc. then your option will probably be to have M.L.D – which is only available privately over any length of time.  Cost ranges from £40 per hr in regions, up to £120 per hr in top London clinics;  you have to pay for this yourself.

If this is any consolation, I had tried about about clinic in London to try and ease my tree-trunk sized swollen limbs;  things were so bad I seriously thought about plunging a Stanley knife into them to relieve the intolerable pressure.

It wasn’t until I ended up in Guys Hospital, where i was told by a Hungarian nurse that MLD would be the only solution for my swelling, that things started to improve.  I made a fuss, got hold of my MEP in Brussels, who managed to get NHS to fund £2,000 worth of private treatment and my limbs got back to ‘nearly normal’.  Now I pay £45 a month for private MLD – and this is well worth it to be pain-free.

For some people a more intensive treatment regime may be necessary, and there are private clinics offering operations.  These don’t suit everybody, so follow progress on the LSN forum.

Costs for private M.LD. varies between £40 – £120 per session, depending on where you live.  The NHS, under certain circumstances, offers this, but it is only to get you on-track, then you have to wear compression garments to maintain health, And to get this, you have to contact an NHS hospital – and beg, demand and call in favours to get an appointment.  It can take up to 6 months.

This is a list of SOME NHS hospitals with Lymphoedema clinics

London:  UCLH, Guys (that’s where I went), St. Thomas, Charing Cross, St. George’s, St. Marys Paddington

In Battersea, Paul’s Cancer Support Centre now has a Vodder-trained Manual Lymphatic Drainage (MLD) therapist.  And only charge £45 for an hour’s treatment (normally London prices are at least double that).

Vodder is the Austrian-developed method for MLD, long acknowledged to be the best; Clara Cummings, their Therapist, travelled to Austria to be trained there, and is now working at Paul’s Centre.

London – private clinics:  Cromwell Hospital, London Clinic

Private Therapist: Sossi Yerissian (recommended to me by LSN)  http://www.sossi.co.uk 

Worcester area:  Pershore Hospital, Kemp Hospice (Kidderminster), Primrose Hospice (Bromsgrove), St Richards Hospice (Worcester)

Good question.

I have just down-sized, hoping to get better health care out of London.  And avoid incredibly long waiting lists, when appointments are often “rescheduled” to extend time even further. Already I am surprised at the speed with which I am getting appointments on the NHS, and the quality of expertise available in both the private sector and the NHS.

So far I haven’t been to see a Support Centre (that’s this afternoon) but over the phone they are loads more welcoming than their comparable centre in London.

And, having suffered in London where stats. say we had ‘9 out of 10 of the worst cancer hospitals in UK’, anything has to be better.

Costs

My first appointment was with a highly-recommended Manual Lymphatic Drainage therapist (M.L.D.) In London I had to pay £80 – from a marvellous therapist who reduced my swelling dramatically.  Here in Oxfordshire it is going to cost me £40 – and everyone to whom I speak says she is wonderful – I shall report!

Some of my London-based consultants, hearing that I wasn’t going to mind (well not too much) if I had to go pivately, have sent me recommendations and letters introducing me to very eminent professors, or recommended “Dr. X who is very young but excellent”.  And when I enquire the cost of a consultation it’s around 2/3rds of Harley Street.

Nothing against London prices, but I won’t have to pay my share of the high rental costs for consulting rooms.

So this has set me thinking.  Are enough of us interested to set up a list of people in other parts of the country?  It must be those who offer services on the NHS (so we know they have been vetted) or, in the case of M.L.D. are on a list of recommended therapists such as the LSN.  

And if we publicise those centres offering top quality care, perhaps it might shame those others into pulling their socks up!

If anyone has any thoughts, do send me an email on verite@greenbee.net or make a comment below.  

And in the meantime look on HealthUnlocked’s website:

https://healthunlocked.com/bonehealth?uid=064044a2-af8c-437e-a81b-a46700cdcdc2&utm_campaign=bonehealth&utm_medium=email&utm_source=notification&utm_term=daily+digest

 

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