Category Archives: Lymphoedema

How to get treatment when GP says funds aren't available

CANCER PATIENTS

NHS logo

Image via Wikipedia

HAVE A RAW DEAL

Particularly if they

have Lymphoedema

This nasty condition often comes as an after-effect of cancer surgery.

The swelling can be treated – sometimes successfully – but as cancer patients don’t complain (much) the NHS in its wisdom has closed down many clinics.

Recently a nurse told me treatment is excellent in the Coventry PCT area;  next door, in the Nuneaton PCT area, patients are told it is not possible to treat Lymphoedema.

If you can’t find a clinic, take advice from

Lymphoedema Support Network   www.lymphoedema.org

020 7351 0990

All of their incredibly efficient office staff are helpful, even though they run on the proverbial shoe-string.  I spoke to Anita.

Step-by-step she gave me instructions, which I added to when I had contact, and eventually got me superb private treatment, paid for by the NHS!

These steps were:

1. Ask your GP for help and referral to a Consultant – these are usually to be found in specialist cancer hospitals, so it might mean doing some travelling.  Believe me, it is worth it, particularly as OCCASIONALLY your swelling might not be down to cancer, but it could be caused by drugs you are on, or other causes.

2. If the Consultant says treatment will be of benefit, ask if this is available locally.

3. if not…..Contact your local PCT.  Your GP should do this, but if for any reason they won’t, you are entitled to do this.  Find out their address by Googling your area name and PCT, or look them up in phone book, or ask your Town Hall.

4. If the PCT says this treatment is not available (more than likely) get on to your MP, and ask for their support.

5.  Give your MP two weeks to reply and suggest writing on your behalf. Mine wrote, the PCT wrote back saying they would fund treatment “in an NHS hospital”. This is catch 22 as they have probably closed down the NHS clinics anyway. Your local cancer hospital might have a clinic, but mine wrote to say theirs was for In-patients only. As Lymphoedema usually doesn’t turn up until you have long left hospital, they know they are relatively safe and you won’t qualify.

Or you are referred for bandaging and special garments.  These may, or may not work on you.  They didn’t on me – having had polio it was a daily struggle to put these on;  the tight elastic they are made of aggravated my sore skin, so eventually it was impossible to wear them.

It was decided that MLD was only method that would work on me, and NHS doesn’t want to offer this as initially it is more expensive.  The fact that in the long run it is cheaper doesn’t worry them.

So it was time for next step.

6.  Get on to your MEP (Member of European Parliament). These are surprisingly powerful.  You find them by Googling MY MEP.

Mine was very supportive, wrote to the appropriate PCT to say I was entitled to treatment, and within two weeks I was starting a course of MLD (manual lymphatic drainage).

9.  In my case the PCT caved in almost immediately, and agreed to fund treatment at a private hospital. Most private hospitals with physio departments will offer this, but make sure the physio has been trained in the Vodder method – the best (as far as I know). Currently I had two courses funded – almost all the pain has gone and now I only get limited swelling – and am gearing up to fight for a last course to clear it up completely.

However, there is another type of treatment which is being offered at London Bridge Hospital (a private hospital).  Talking to their nurses, it seems that this could be even more effective, so would suggest you contact them for more information.

If you feel like it, the Klinic Bad Sulza (see under Spas – Germany) offers excellent treatment, but as you need to take an 18-22 day course, you must be able to pay for that long a stay in this private clinic (around £120 per day all-in).

And good luck.  Read through the notes above.  You will probably have to write two letters – and that was all I did.  It was surprisingly easy once I had got in touch with my MEP.

 

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Lipoedema – not Lymphoedema

What is Lipoedema

(Lipodema in N. America)

 

Louise Farquharson has kindly written this article.

Louise has an online support group, based in Edinburgh,with members all over Britain.

http://www.edinburghlipoedemasupport.webs.com

 

Lipoedema is often wrongly misdiagnosed as lymphoedema

~ but there are differences between the two conditions.

In lymphoedema the sufferer’s lymphatic system is compromised and not working correctly, either due to surgical intervention or radiotherapy treatment (secondary lymphoedema) or an unexplained failure in function or even missing lymphatic vessels (primary lymphoedema).

In lipoedema the sufferer has a healthy lymphatic system, but the lymphatic fluid is being impeded in its passage by abnormal fat deposits.  Without diagnosis and treatment, over time the lymphatic system may become compromised and lipoedemics then, unnecessarily, develop lipo-lymphoedema – lipoedema with lymphoedema.

Lipoedema is a disorder of adipose tissue that occurs almost exclusively in women; it has also been called ‘painful fat syndrome’.  Lipoedema causes limbs to enlarge, mainly affecting the legs and thighs but may present in the upper arms also.  Lipoedema is thought to occur as a result of an abnormal accumulation of fat cells in the tissues under the skin.  Unlike lymphoedema, lipoedema occurs symmetrically in both legs.  Lipoedema can in some cases be familial, more than one woman in a family can present with the condition.  Lipoedema usually manifests itself at puberty, but can occur or worsen during any hormone ‘spike’ in the body eg pregnancy, peri-menopause, menopause.

If left untreated, lipoedema may cause multiple health problems leading to mobility issues.  Sufferer’s quality of life may be depleted, emotionally and physically, as they are often dismissed as simply obese.

Lipoedemic’s hips, thighs and buttocks present as disproportionately larger than their upper body.  They experience heavy dragging feelings in their legs, often with extreme tenderness and aching within the affected limbs, their mobility often being affected.  Lipoedema does not affect the feet.  Lipoedema causes a classic ‘bracelet’ effect round the ankle, a prominent fatty ankle ring develops.  Lipoedemic fat does not usually respond to dieting or exercise.  Lipoedemic’s can lose weight, but only from the non-lipoedemic areas.

Lipoedema causes sufferer’s to experience sensitivity to touch, with pain being a main symptom of the condition.  Pain is not always a factor in lymphoedema. With lipoedema, the skin bruises easily and often with little pressure.  Excessive pain may be experienced on the shins and knees.  As the condition progresses, this pain may increase due to the continued blockage of the lymph fluid, which can lead to the tissue hardening.

Lipoedemic’s affected limbs can develop an ‘orange peel’ appearance due to the loosening of the tissue.  The subcutaneous fatty tissue has a soft consistency, but small nodules can be felt under the skin.  As the condition progresses, the skin surface will become uneven and harder due to the increasing nodular structure of the subcutaneous fatty tissue.  Unlike lymphoedema, pitting of the skin is not present in lipoedema.

Why do I think lymphoedemics and lipoedemics should support each other? 

Although they are two different conditions, what we share with each other is the need to access the same treatment.

Both lipoedemics and lymphoedemics require compression and manual lymphatic drainage.  Resources for both conditions are not plentiful, however most lipoedemics struggle merely to obtain a diagnosis let alone treatment.

There is a shameful lack of treatment available for lipoedemics through the NHS.  The only lipoedemics who I know have managed to access (a very little) amount of MLD are ones who have developed lipo-lymphoedema.  How sad it is when I hear those women tell me that “they are fortunate that they have developed lymphoedema” because now they can access some treatment.  That’s not to say that treatment for lymphoedema is plentiful.

What pains me is the number of women out there who are just written off as ‘obese’ or ‘fat’, they are not believed when they say they have been unsuccessfully trying to diet for years. 

Written off, so many of them live in pain, with a condition that they cannot control, with ever decreasing mobility. 

I was one of those women.  We need to be standing together, making a larger voice, to ask for access to the treatment we all need.

Lymphoedema survivors can now ditch the grunge

LympheDivas rolls out

 

 

fashion sleeves

Sleeves come in matching colours for clothes

 

Two American breast cancer survivors took one look at ‘grunge’ coloured elastic sleeves – and said ‘No’.

Thanks to their persistence, women can now buy compression sleeves in different colours, patterns, stripes and anything else the company can think up.

There are even specially-themed sleeves to wear when Dragon Boat racing!

Each sleeve is made to measure, and they cost $90.

If you are fed up with ‘granny grunge’ sleeves, look them up on www.lymphedivas.com

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Well done the Welsh!

Welsh Dragon

C;CSpecial Image via Wikipedia

£1 million to be invested in Lymphoedema services for Wales


In March the then current Health Minister of Wales, Edwina Hart, announced that £1m will be made available to help lymphoedema patients, by supporting the continued implementation of the Assembly Government’s Lymphoedema Strategy.

The money will employ specialist staff in Health Boards across Wales, as well as towards establishing specialist clinics for the condition.

Mrs Hart said:

“This condition affects individuals physically, psychologically and socially.  It has a significant impact on quality of life and the ability to undertake normal activities of daily living. This investment will help to improve care and treatment for sufferers, who face coping with this condition for the rest of their lives.”

The Welsh Assembly Government’s Lymphoedema Strategy is aimed at improving consistency in providing high-quality lymphoedema services across Wales through improving the diagnosis, care and treatment for all lymphoedema sufferers, providing better outcomes and will empower patients to maximise their own independence.

The current Welsh Minister for Health is Lesley Griffiths.

 

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Helping yourself with Lymphoedema

Don’t just sit there  – use some of Adrianna’s ideas

Adrianna Holman has written a really useful book, ‘Love your Scar’.  Not only does it give breast cancer patients lots of useful informtion, but she also writes helpful advice about Lymphoedema – gleaned from her training and experience working at London Bridge Hospital.

One thing to remember:  she says “your lymphatic system has no heart to pump it, and flows largely upwards and against gravity. To do this it depends on muscular contractions” and therefore it is essential to be as active as possible, “to help your body pick up and dispose of the rubbish”. 

Then, to help you get in the swing, she has a series of pin figures illustrating simple exercise to get things started.

1.  Rock the boat

Lie flat – gently rock the pelvic bone forwards and backwards by tilting your coccyx slightly.

2.  Frog’s legs

Lie flat on your back.  Keeping the soles of your feet together bend the knees outwards (making a triangle) and slowly pump your legs up and down.

A variation is to keep knees together and allow bent legs to fall from side to side.

3.  Backstroke

Lie down with knees bent upwards and feet flat on floor.  Then do a ‘backstroke’ bringing alternate arms up straight over your head and as far back as possible withouth hurting.

4.  Cat stretch

On floor on hands and knees.  Arch your back upwards, then go down into the reverse and form a U shape. 

5. Spider up the wall

Face the wall, place one hand on wall and, using your fingers, climb up the wall – like ‘incy-wincy spider’ we did as children.

Massage

With today’s fast track production line cancer treatment, doctors hardly ever touch patients.  Now, I don’t want to go back to the old childhood days, when a visit to the doctor meant you were highly embarrassed whilst they told you to undress – but sometimes a healing touch can work wonders – and this is where massage comes in. 

There are so many different kinds, and in her book Adrianna not only gives the full background to what these do, but also explains what different base oils can help with, when used in conjunction with massage. 

And I know several friends, whom I won’t embarrass by naming, who will be interested that she says “if you are going to have any alcohol, red wine has redeeming qualities through its antioxidant properties.  Remember we are talking about a small glass twice a week….”

This is typical of the gentle, thoughtful and sensible approach of this book;  I keep on returning to it to dip in to find something I wanted to check. 

Contact

To buy book:  www.LoveYourScar.com

www.homeopath.moonfruit.com   

Adrianna.Holman@hotmail.co.uk

 

 

 

 

Pain relief we can buy over the counter

When pain hits – sometimes simple remedies help


Watching a footballer on the news, rolling around on the ground after he had been injured in a match, I saw his coach bend down, and take out a familiar spray can from his bag.  I see this can on the shelf every time I collected a prescription at the Chemist, so next time I went in I asked Lajja if it was any use for relieving pain?

She explained that there were two types of spray to relieve pain, a heat spray and a cold spray.  Trying to remember what the coach had been waving across the footballer’s knees, I explained it was to relieve pains I get with Lymphoedema.  She discussed these, I gave my usual non-scientific explanations, and she said I should try both sprays to find out which would work, as it was difficult to know what was causing the problem.

So I came home with two spray cans:  Deep Heat heat spray and Deep Freeze cold spray, both made by Mentholatum.  They are a well-known company that also make the Rohto eye drops, which do a sterling job on my ‘dry’ eye.

The cans stood on the table, and I waited for the usual pains – which of course, because I actually wanted them, didn’t appear for several days.  But finally I got them, and dashed for the nearest spray – which happened to be Deep Freeze.

I sprayed like mad, then realised that the pain had gone away very quickly.  Next evening, the same thing happened.  A long spray, and the pain disappeared almost immediately.

I am not a doctor, so don’t know what caused Deep Freeze to work, but went on the Mentholatum website.  It says “always try on a small area first.  Works like ice, delivering a burst of cooling pain relief”, which it does.  Apparently it is good for sprains, strains, muscle ache, backache and arthritis.  Doesn’t say anything about Lymphoedema, but I don’t even know if the pains are caused by this – just that the pain arrived at the same time as Lymphoedema.

It may be a placebo – I don’t know.  I have no scientific evidence or clinical trials, but now I watch the news carefully, and if a footballer starts rolling on the ground I am there being a voyeur waiting for the coach to take his can out of his bag.  If it works for over-paid footballers, it’s good enough for me.

So if you get these pains,  have a talk with your doctor or the pharmacist, and ask their advice if this might work for you.

Lymphoedema treatment just got more accessible

How to apply for NHS funding

Two years ago it took several letters and an approach to my MEP, before I got my first course of MLD (Manual Lymphatic Drainage) funded by the PCT.

Today, I don’t know if they saw my name at top of paper, or if it has genuinely got easier to get funding, but £1,000 of further treatment has just been authorised.

Here’s what I did to get this approved :

1.  Found therapist who is trained in Vodder method.  The one I chose was recommended by the Lymphoedema Support Network, and this is important as the therapist needs to have all the approved qualifications, otherwise PCT will refuse funding.

2.  Went to see therapist Sossi Yerissian, who gave me an in-depth hour long interview, examined me, then told me what she could do for me.   Sossi wrote a letter for me  describing what treatment she advised.

3.  Went to see my doctor at the local NHS Practice and handed over Sossi’s letter.  She wrote off  asking for funding for the course of treatment and included Sossi’s letter for evidence.

4.  There was a delay of several weeks, so I phoned commioners Business Manager to ask what was causing this hold-up. It was a matter of two small items missing from the doctor’s letter, and I was able to fill these in over the phone.

5. Ten days later a letter arrived they would grant funding for the above treatment”.

6.  The whole process actually took two months.

So just ASK!

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Lymphoedema patients should demand exercise classes

A common utility bicycle
Riding a bike is good exercise  Wikipedia

MANAGING LYMPHOEDEMA

Dr. Jacqueline Todd’s recent talk on Lymphoedema to the Lymphoedema Support Network was packed out.  She kept her audience interested for over 90 minutes, and they were still asking questions when she had to leave.

During her talk she gave out tips

  • Use slow stretches
  • Suitable exercise is good for us
  • Get to know your body and build up exercise gradually
  • Remember PPB – Position, Posture and Breathing
  • Change position frequently, and never sit in same position for any length of time
  • Combine rest and exercise
  • Try to rest with swollen limb higher than the heart, using gravity for draining
  • Important to wear compression garment when exercising
  • Cycling is good exercise
  • So is diving – tight wet suits act like a compression bandage and improve the effect

But if cellulitis appears

  • Treat with anti-biotics
  • Rest – don’t exercise
  • Don’t wear garment

She then showed us a video of the exercise class run at Leeds, and said if we wanted the same it was up to  us to ask the Chief Executive of the hospital where we were treated to start one up.  Ginger up our doctor to do something, and keep on at them.

Most hospitals have the appropriate exercise equipment in their physiotherapy department, but this often lies idle for much of the week.  Lobby for a physio to run a class, and keep on and on.  The Dept. Health constantly repeats the mantra that we have to exercise to combat obesity – so take them at their word and DEMAND exercise classes.  We only have our swellings to lose!

And let Jacqueline know what you are doing.  Contact her via:-

Lymphoedema Support Network, St. Luke’s Crypt, Sydney Street, London, SW3 6NH
020 7351 0990
Email: adminlsn@lymphoedema.freeserve.co.uk

http://www.lymphoedema.org/lsn

STOP PRESS

Dr. Todd would welcome your help with Lymphoedema Research, if you have lymphoedema following cancer or its treatment.

She says  “we are hoping to gain insight into all sorts of experiences – you do not need to have personally experienced social difficulty or appearance concerns to take part.  The main aim is to identify the nature of social difficulty, avoidance and reaction to visible difference in people with lymphoedema after cancer. There are different ways that you can take part that can take an hour or a full day. You will not incur any expense if you want to take part”.

The research is due to start in January 2010, and if you would like to register your interest please email your details to jacquelyne.todd@leedsth.nhs.uk
or you can write to :
Dr Jacquelyne Todd,  Lymphoedema Department, Wharfedale Hospital, Newall Carr Road, Otley, West Yorks

How to get Lymphoedema and other treatments when the NHS says no

Normal Lymph Node
Lymph node  Flickr

TEN STEPS ON HOW TO GET LYMPHOEDEMA TREATMENT

If you have Lymphoedema, even if services have been withdrawn in your area, it’s worthwhile making a fuss: read on for information on how you can possibly obtain treatment.

For those of you who would like to go to Europe for treatment that isn’t available here, the same ground rules also apply Steps to take are underlined.

Anita from LSN gave me Step-by-step instructions, which got me superb private treatment, paid for by the NHS!

These steps were:

1. Ask your GP for help and referral to a Consultant – these are usually to be found in specialist cancer hospitals, so it might mean doing some travelling.

2. If the Consultant says treatment will be of benefit, ask if this is available locally.

3. if not…..Contact your local CCG.  Your GP should do this, but if for any reason they won’t, you are entitled to do this.  Find out their address by Googling your area name and,  or look them up in phone book, or ask your Town Hall.

4. If the CCG says treatment is not available (more than likely) get on to your MP, and ask for their support.

5.  Give your MP two weeks to reply. If you have an MP who doesn’t help, then …

6.  Get on to your MEP (Member of European Parliament). These are surprisingly powerful.  You find them by Googling MY MEP.

This is where paths diverge – for Lymphoedema follow steps below.

For treatment ABROAD, if the NHS refuses this let your MEP fight this for you.

7. My MEP happens to be Syed Kamal, who is very interested in health. Incidentally, don’t worry if your MP/MEP is a member of the opposition – whichever party is in power. Often they are more eager to help constituents).  Find address on www.europarl.org

8.  Get the MEP to write a letter to the CCG saying it is your right to have this treatment.

Give the MEP the basic outline (keep it brief).  They will know how to turn the facts you give them into the right letter.

With me, the previous PCT wrote a letter saying they would fund treatment “in an NHS hospital”. This is catch 22 as they have probably closed down the NHS clinics anyway. Your local cancer hospital might have a clinic, but mine wrote to say theirs was for In-patients only.  What a cop-out!

9. So go back to your MEP, explain the situation, and mine sent off a letter saying – in effect – that the PCT HAD to fund this – privately.

10. In my case they caved in almost immediately, and agreed to fund treatment at a private hospital. MEPs have more power than we realise, and here in UK officials seem frightend of them.

Most private hospitals with physio depary tments will offer this, but make sure the physio has been trained in the Vodder method – the best (as far as I know). Currently I had two courses funded – almost all the pain has gone and now I only get limited swelling – and am gearing up to fight for a last course to clear it up completely.

If you feel like it, the Klinic Bad Sulza (see under Spas – Germany) offers excellent treatment, but as you need to take an 18-22 day course, you must be able to pay for that long a stay in this private clinic.

And good luck.  It was surprisingly easy once I had got in touch with my MEP.

verite@greenbee.net

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