Primary Lymphoedema Patients Need to be Heard

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Primary Lymphoedema Patients Need to be Heard

Postby patoco » Tue Jun 20, 2006 11:43 pm

Primary Lymphoedema Patients Need to be Heard

Patient Advocacy in the UK

Lymphedema People

http://www.lymphedemapeople.com

....................

Originally Posted 05/26/2005 by Silkie

This letter as from tomorrow will be emailed to every Primary Health Care Authority in the UK!

If you want to add weight to this cut and paste it, add your name to it and send to your own MP and local Primary Health Care Trust
let's DO SOMETHING instead of just taking this CRAP!

ALSO COPIES WILL BE SENT TO ALL POLITICAL LEADERS IN THE UK AND EEC BRITISH MEMBERS!

Letter to ALL Primary Health Care Authorities in the UK

.....................

COULD YOU PLEASE TELL US ‘PRIMARY’ LYMPHOEDEMA SUFFERS

1) WHY WE ARE DISCRIMINATED AGAINST?

2) SURELY ALL TREATMENT FOR LYMPHOEDEMA IS THE SAME?

3) WHY CAN DOCTORS SEEM TO DIAGNOSE SECONDARY LYMPHOEDEMA, BUT SEEM TO HAVE GREAT DIFFICULTY RECOGNISING PRIMARY?

4) WHY ARE THERE CLINICS AND TREATMENTS FOR SECONDARY AND NOT FOR PRIMARY?

5) ALL HOSPITALS HAVE PHYSIO DEPARTMENTS, WHY CANNOT LYMPHOEDEMA BE TREATED THERE?

6) IF IT IS A CASE OF FUNDING----WHY CAN YOU ACCOMMODATE
SECONDARY AND NOT PRIMARY?

7) THE COST IN CARE OF THE ELDERLEY WITH OEDEMA MUST COST
CARE TRUSTS A STAGGERING AMOUNT
(think of the savings if it had been treated years ago and not ignored)

In Britain our experience is that non- cancer lymphedema out-number cancer-related lymphedema 3 to 1.

There are twice as many secondary clinics as primary, this is not logical, and is discrimination!

There are also many primary lymphoedema patients still going undiagnosed still being told to:

‘LOSE WEIGHT AND GIVEN DIUTETICS’
(Unbelievable)

Some facts from one of the Worlds leading authorities on genetic research into primary lymphoedema Dr. Peter Mortimer.

http://www.lymphovenous-canada.ca/mortimer.htm

October 2003 issue of the Quarterly Journal of Medicine: "Lymphoedema: an underestimated health problem" where we looked at the population of South West London of over 600,000 people. What we found is that in people over 65 years of age, 1 in 200 had chronic lymphedema. 29% of the people we looked at had had an acute infection (cellulitis) in the affected area, with 27% of those being admitted for intravenous antibiotics. Individuals stayed in the hospital for treatment on average 12 days, which cost the National Health Service £2,300.00 pounds. Lymphedema caused time off work in close to 80% of these individuals affecting the employment status in 9%. Quality of life was below normal, with 50% experiencing pain or discomfort from their edema.

Lymphoedema arising for reasons other than cancer treatment is much more prevalent than generally perceived, yet resources for treatment are mainly cancer-based, leading to inequalities of care. Chronic edema is a common problem in the community with at least 100,000 patients suffering in the UK alone, a problem poorly recognized by health professionals.

There aren't many areas in medicine where the patient can tell the doctor more than the doctor knows, but that is certainly true for lymphoedema.

It is genetic children are born with this! It is hereditary!

THIS IS A CRONICALLY DIBILLITATING CONDITION!
HOW LONG ARE WE GOING TO BE IGNORED?


This year the World Health Organisation has put Millions into the eradication of Lymphoedema in third world countries in the next 10 years.

A large pharmaceutical company is also helping in this fantastic undertaking, as is the USA and the UK.

I wonder if in 10 years time one of the leaders in health and medical research ‘The United Kingdom’ will have stopped discrimination against primary lymphoedema and be able to diagnose and treat primary let alone eradicate it.

The latest parliamentary questions published on: http://www.theyworkforyou.com/

Marion Roe (Broxbourne, Con) Hansard source

To ask the Secretary of State for Health what guidelines are in place to ensure that non-cancer related lymphoedema patients, who do not have access to a lymphoedema clinic, receive appropriate compression garments as one of the recognised four cornerstones of lymphoedema treatment.

The answer

Stephen Ladyman (Parliamentary Under-Secretary, Department of Health) Hansard source

We have issued no specific guidance to hospital trusts and primary care trusts for the provision of compression garments to non-cancer related lymphoedema patients. Decisions on what treatments to offer to patients with lymphoedema are a matter for the clinicians in charge of their care.

Both the honourable members do seem unaware that the necessary garments should be measured and fitted by a practioner of lymphoedema who we can only see at Lymphoedema Clinics and we are back to the same old problem:

WHY ARE PRIMARY LYMPHOEDEMA SUFFERERS NOT GIVEN THE SAME ACCESS TO TREATMENT AS SECONDARY?

David Drew (Stroud, Lab/Co-op) Hansard source

To ask the Secretary of State for Health what access there is to lymphoedema clinics in each primary care trust in the Avon, Gloucestershire and Wiltshire strategic health authority area.
Rosie Winterton (Minister of State, Department of Health) Hansard source

The information requested is not collected centrally.

It is the responsibility of primary care trusts to commission services to meet the health needs of their local communities
Why is it NOT collected centrally?

Try asking Dr. Mortimer Professor of Dermatological Medicine, Dept. of Cardiac and Vascular Sciences, St. George's Hospital Medical School, London, UK and the Royal Marsden Hospital, London for information on primary lymphoedema treatment.

THE GOVERNMENT SAY IT IS UP TO PRIMARY CARE TRUSTS????

Who ever is responsible, you are messing with people’s quality of life here!

It took 42 year for me to be diagnosed and get treatment, a terrible story I'm sure you will agree 42 years!

THE REAL TRAGEDY IS I AM NOT THE ONLY ONE THERE ARE THOUSANDS MISDIAGNOSED AND ARE STILL PEOPLE OUT THERE THAT ARE YET TO BE CORECTLY DIAGNOSED!

YOU HAVE PHYSIO DEPARTMENTS, YOU HAVE SECONDARY CLINICS, AND SURELY PEOPLE INTELLIGENT ENOUGH TO RUN PRIMARY CARE TRUSTS CAN FIGURE OUT A WAY OF SHARING THESE FACILITIES?

Dorothy Mooney --- Primary Lymphoedema sufferer born 1950 diagnosed 2003

Veronica Fisher --- Primary Lymphoedema sufferer born 1949 diagnosed 2004

I wonder if anyone will listen

silksxxxxxxxxx

............

Responses

............

Silkie 07/19/2005

I thought i would update you as i am so bad at doing this data base with all the info we have had coming in

The response has been so encouraging

Roni had the brilliant idea of sending the letter as a letter of complaint and she did hundreds of them not only to pct's but to MP's and MEP's and to many other groups and proffesionals we thought needed to be aware of what we were doing .

there is too much info to go into detail

but we sure have helped primary lymph become a topic of conversation at the trust board meetings

we have had trusts wishing us luck encouraging us to keep up the good work and to keep on shaking the lymph community up

some trusts cannot have primary clinics but the practioners and nurses have seminars for family doctors to learn how to recognise primary lymphoedema

some are teaching there district nurses how to wrap
in the right way for lymph limbs

Some have independant assesments going on or are having them started to find out the need for primary in there areas

I have to say the hospices are wonderful at suporting not only the trusts in their areas but in the neigbouring area to offering primary clinics

I am still answering individual trusts,
it is a long job
and i must say many didnt not reply

but over all i think the letter was successful and raised a little more awareness of primary lymphedema in the uk

Iwould like however to point out

Mr Blair did not respond
nor any of his mp's
nor had the health minister
nor any Euro Mp

We will keep pluggin away

The way the system in the UK works via parliament
is when the parliament is dissolved and a new goverment is elected
then anything that was not completed in the last term of officve
has to begin again

Our national support Grp and all the work they have put in over the last five years
has started lobbying MP's again it seems to me that the goverment
need to change its laws on ongoing legislation like this
but unfortunately you have to start from squaew one again
which is a typical political COP OUT

I will as soon as i have finished it put all the data we have onto the chat site for anyone that is interested
hugsssssssssss silksxxxxxxxxxx

oh the USA has to put up with this mad lympher to

i am still waiting for reply of hillary clinton
x your fingers friends

lollllllllll i love roughaling feathers

............
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Management of Lower Limb Lymphoedema in the United Kingdom.

Postby silkie » Tue Jun 27, 2006 4:14 am

Talking in chat this weekend we were discussing Primary and secondary
lymph and the difference in figures between the USA and this country.
obviously there is a much higher population in the USA but that does not account for the differences in figures.

A member asked why we have more primary than secondary do you have less success with curing cancer No thats not the answer the cancer care is brillaint.
We really need figures from all countries concerning lymphedema Primary lymph
is so difficult to access as so many go undiagnosed for many years
The figures of primary leg lymph do not include all those that are still undiagnosed
Can you Imagine how big the problem truely is and still there are
NOT ENOUGH DOCTORS THAT RECOGNISE THE CONDITION
NOT ENOUGH LYMPH SPECIALIST TO REFER US TO
NOT ENOUGH THERAPIST THAT ACTUALLY DO PRIMARY LYMPH
AND IT SEEMS NOT ENOUGH MEMBERS OF PARLIAMENT THAT CARE








Management of Lower Limb Lymphoedema in the United Kingdom.

Eur J Vasc Endovasc Surg. 2005 Nov 29

Tiwari A, Myint F, Hamilton G.

Department of Vascular Surgery, Royal Free Hospital, Royal Free and University College Medical School, Pond Street, London NW3 2QG, UK.

OBJECTIVE: Many investigations and treatments exist for lower limb lymphoedema. We undertook a survey on the management of this condition by vascular surgeons and the resources available for its treatment in the UK. DESIGN: A questionnaire was designed to assess the management of lymphoedema.

MATERIALS AND METHOD: A postal questionnaire was sent to all members of the The Vascular Society of Great Britain and Ireland.

RESULTS: 251/440 (57%) consultant surgeons returned a completed questionnaire comprising 45.3% teaching hospital and 54.7% district general hospital (DGH) consultants. 77.9% of the consultants saw less than 10 patients annually with lymphoedema. The commonest causes of lymphoedema were primary lymphoedema (99.3%) and malignancy (37.1%). Lipoedema, a cause of limb swelling was only seen or recognised by 46.2% of the consultants. The commonest investigations performed were a duplex scan, lymphoscintigram, full blood count and urea and electrolytes. The common methods of confirming lymphoedema were either by lymphoscintigram (54.5%) or from a diagnosis of exclusion (33.7%). Lymphoedema physiotherapy was available only to 53.8% of the consultants. Surgery was performed by 10.5% of consultants. 73.4% of the consultants believed that lymphoedema is managed inadequately and 72.9% believed that resources are insufficient in the UK for this condition.

CONCLUSION: In the UK the majority of vascular consultants see less than 10 patients annually with lymphoedema. Very few patients undergo confirmation of this diagnosis with non-invasive investigation and very few consultants perform surgery. Management of this condition is perceived by the consultants to be poor, with a lack of resources and particular shortage of lymphoedema physiotherapists. Centralisation of these services may be a way of improving this condition.

PMID: 16324854 [PubMed - as supplied by publisher]

Pub Med

THANKS PAT FOR THE ARTICLE

PS 57% OF SURGEONS COMPLETED THE QUESTIONAIRE .

A SILKIE THOUGHT !

I WONDER WHY 43% DIDN'T? WELL ITS ONLY LYMPH

WHY BOTHER LET THEM LIVE WITH IT ---- THE OLD OLD STORY MAYBE?
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