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Today's lay people may have expertise in one or more medical
conditions which reaches beyond that of their GP or professional members
of an Individual Funding Request Panel. For example, I was up to speed
with the relevant 'NHS Improving Outcomes' guidance when diagnosed with
breast cancer, yet apparently my GP was not and five months later still
thought I should have attended the local mobile mammography unit, rather
than be referred for triple assessment of my lump.
Worryingly, both my GP and oncologist freely admitted they knew
little about lymphoedema when I pointed out abdominal swelling twelve
years after NHS cancer treatments, though these had included full pelvic
radiotherapy and further radiotherapy to inguinal nodes.
The local hospice-run lymphoedema clinic refused me access to Manual
Lymphatic Drainage (MLD) saying repeatedly, "We have plenty of people
worse than you." I learned that none of the money they received from the
Primary Care Trust (PCT) was ring-fenced for lymphoedema services and
local lymphoedema clinics were financed only to treat arm or leg
lymphoedema. ('Official' information even today often defines lymphoedema
as 'a swelling of an arm after breast cancer treatment' or 'a swelling of
an arm or leg'.)
I learned that lymphoedema was a progressive condition and mid-line
lymphoedema like mine warranted priority treatment. And I learned more
about the horrors that awaited me if I did not receive treatment.
After months of fruitless struggle for a referral to a lymphoedema
specialist, my GP wrote to my oncologist who contacted the lymphoedema
service at the hospital which had treated me for cancer. They were funded
to treat only people within a small radius of the hospital and I lived
forty miles away, but a compassionate physiotherapist specialising in
lymphoedema kindly examined me and gave me a written diagnosis, suggesting
MLD treatment was necessary. The PCT said treatment for midline
lymphoedema was not included in their commissioning list, and as there was
no evidence that such treatment would improve my condition they would not
want to give me treatment that might harm me.
I was a member of the Royal College of General Practitioners' Patient
Partnership Group at the time and gave a short presentation to them about
lymphoedema, as I had read that few health professionals had experience or
knowledge of the condition. I showed slides of people affected by
elephantiasis and lymphorrhoea, knowing this would likely be my fate if I
did not receive treatment soon. The response of one GP was, "People have
hundreds of different conditions. They can't expect to be treated for all
of them."
Brick wall after brick wall. I felt on the scrap heap. It took a year
of increasing depression due to the lack of acknowledgement and care
(becoming two sizes larger than my normal size 8 clothes) and a formal
complaint to the PCT before my case was looked at by their 'expert' and a
'one-off' treatment allowed. This was monitored at beginning and end by a
lymphoedema practitioner from a distant county (at what cost?) but,
although the treatment worked - 3 litres of fluid lost - I could not
access subsequent treatments.
Unless the condition is treated early, lymphoedema patients must
comply with daily self management - for me this means wearing support
garments and doing tedious simple lymphatic drainage massage. But
lymphoedema patients also need ongoing monitoring and top-up treatments as
and when necessary, and the health professionals and 'experts' did not
seem to appreciate this. Neither did they appreciate that the cost of
hospitalisation for treating cellulitis meant early lymphoedema treatment
was cost effective.
Perhaps thanks to NICE Supportive and Palliative Care guidance, and
certainly thanks to the work of one special physiotherapist specialist in
lymphoedema, I am now able to access monitoring and treatment at the
expanded lymphoedema clinic within the hospital trust where I was treated
for cancer.
I am a lay person, but with twenty years experience of user
involvement in health services at local and national level. I not only
have a lay perspective to offer, but experience and expertise. Surely
these could well be useful to any IFR? And I am one of many.
Competing interests:
No competing interests
11 August 2011
Mitzi AJ Blennerhassett
Medical writer
Connected Advanced Communication Skills Expert Reference Group
Lay people have expertise to contribute
Today's lay people may have expertise in one or more medical
conditions which reaches beyond that of their GP or professional members
of an Individual Funding Request Panel. For example, I was up to speed
with the relevant 'NHS Improving Outcomes' guidance when diagnosed with
breast cancer, yet apparently my GP was not and five months later still
thought I should have attended the local mobile mammography unit, rather
than be referred for triple assessment of my lump.
Worryingly, both my GP and oncologist freely admitted they knew
little about lymphoedema when I pointed out abdominal swelling twelve
years after NHS cancer treatments, though these had included full pelvic
radiotherapy and further radiotherapy to inguinal nodes.
The local hospice-run lymphoedema clinic refused me access to Manual
Lymphatic Drainage (MLD) saying repeatedly, "We have plenty of people
worse than you." I learned that none of the money they received from the
Primary Care Trust (PCT) was ring-fenced for lymphoedema services and
local lymphoedema clinics were financed only to treat arm or leg
lymphoedema. ('Official' information even today often defines lymphoedema
as 'a swelling of an arm after breast cancer treatment' or 'a swelling of
an arm or leg'.)
I learned that lymphoedema was a progressive condition and mid-line
lymphoedema like mine warranted priority treatment. And I learned more
about the horrors that awaited me if I did not receive treatment.
After months of fruitless struggle for a referral to a lymphoedema
specialist, my GP wrote to my oncologist who contacted the lymphoedema
service at the hospital which had treated me for cancer. They were funded
to treat only people within a small radius of the hospital and I lived
forty miles away, but a compassionate physiotherapist specialising in
lymphoedema kindly examined me and gave me a written diagnosis, suggesting
MLD treatment was necessary. The PCT said treatment for midline
lymphoedema was not included in their commissioning list, and as there was
no evidence that such treatment would improve my condition they would not
want to give me treatment that might harm me.
I was a member of the Royal College of General Practitioners' Patient
Partnership Group at the time and gave a short presentation to them about
lymphoedema, as I had read that few health professionals had experience or
knowledge of the condition. I showed slides of people affected by
elephantiasis and lymphorrhoea, knowing this would likely be my fate if I
did not receive treatment soon. The response of one GP was, "People have
hundreds of different conditions. They can't expect to be treated for all
of them."
Brick wall after brick wall. I felt on the scrap heap. It took a year
of increasing depression due to the lack of acknowledgement and care
(becoming two sizes larger than my normal size 8 clothes) and a formal
complaint to the PCT before my case was looked at by their 'expert' and a
'one-off' treatment allowed. This was monitored at beginning and end by a
lymphoedema practitioner from a distant county (at what cost?) but,
although the treatment worked - 3 litres of fluid lost - I could not
access subsequent treatments.
Unless the condition is treated early, lymphoedema patients must
comply with daily self management - for me this means wearing support
garments and doing tedious simple lymphatic drainage massage. But
lymphoedema patients also need ongoing monitoring and top-up treatments as
and when necessary, and the health professionals and 'experts' did not
seem to appreciate this. Neither did they appreciate that the cost of
hospitalisation for treating cellulitis meant early lymphoedema treatment
was cost effective.
Perhaps thanks to NICE Supportive and Palliative Care guidance, and
certainly thanks to the work of one special physiotherapist specialist in
lymphoedema, I am now able to access monitoring and treatment at the
expanded lymphoedema clinic within the hospital trust where I was treated
for cancer.
I am a lay person, but with twenty years experience of user
involvement in health services at local and national level. I not only
have a lay perspective to offer, but experience and expertise. Surely
these could well be useful to any IFR? And I am one of many.
Competing interests: No competing interests