Patient Review of 2022 NICE Guidance 'Liposuction for Chronic Lipoedema'

By Jaqueline Smith, diagnosed (privately) with Lipoedema in her knees, upper and inner thighs, hips, buttocks and arms.

 

"Nerves are raw amongst the Lipoedema community following NICE's decision to suspend Liposuction for chronic lipoedema (IP1843/1). We now have to wait for further evidence to emerge to support the procedure from a randomised controlled trial currently in progress in Germany.  This decision will adversely affect the lives of millions of women living with Lipoedema as the disease progresses and in many, leading them to lives in a wheelchair as their mobility has deteriorated.

 

Going forward I ask two questions:

 

1. What is the duty of care to provide treatment for patients who suffer with Lipoedema?
2. Whose responsibility is it to provide that duty of care?

 

The NICE document mentions conservative treatments as being available, such as manual lymphatic drainage (MLD) and compression, but in truth, this isn’t always provided on the NHS, and actually, there is very little help provided to those with a Lipoedema diagnosis.

 

Every day, we see this on support groups, growing evidence of just how lacking the duty of care is. Ladies feel they are discriminated against for having Lipoedema; as though their appearance is their fault or that their weight, is their fault. They feel failed on every level.

 

Like many ladies I had to seek my own help, my own diagnosis. My GP admitted he was at a loss as to where to refer me and asked me for advice on whom he should contact. Fortunately for me, my own GP is considerate, as you'd expect a GP to be, but not all are. You hear some dreadful stories, heart-breaking, sad, neglectful, lipoedema ladies are angry.

 

So, though the NICE decision was very disappointing, it was not a shock to many of us, it just really adds to the way we have been treated for many years. We must now wait for further medical evidence. Yet they don't say how long the German study will take. They just don't say. Neither do they reassure desperate ladies who are suffering in severe pain and needing this surgery how much longer they are expected to wait to receive any care? My view is that this is complacent and shows no respect or responsibility for the future of these patients.

 

Given that many ladies in late stage 3 have already been misdiagnosed and waited many years for help, hoping for a positive response from NICE. There is no information in the report that suggests what efforts are  going to be made mandatory. i.e., future medical schooling for this type of surgery on the NHS. Or lipoedema clinics. Or care. In fact, nothing in that report has a solid Duty of Care Plan at all. 

 

Let me provide a picture of what is and isn’t happening on the NHS.

 

1. There is no MLD for Lipoedema on the NHS, Private care for MLD is sought by those patients fortunate enough to afford it.
2. Compression garments are not routinely supplied. Women are having to fight for this very necessary treatment which is set out in clinical guidelines by expert doctors.
3. There are no certified clinicians for Lipoedema.
4. There are no specific clinics for Lipoedema
5. There are no specific surgeons in NHS hospitals – just one in Scotland.
6. There is a severe lack of GPs who understand Lipoedema.
7. Women are referred, if diagnosed by private doctors to the odd one or two doctors across the whole of the UK.

 

Is there any wonder that more research has to be sort from other countries? The UK does not take Lipoedema or treatments for Lipoedema seriously. 

 

I have huge concerns for our health service or more appropriately, the lack of health service for Lipoedema. I feel Lipoedema is discriminated against, there are appalling failures that are not mentioned in the NICE report.

 

It may be said that Lipoedema it is a "rare" disease.  It is only rare because of the lack of diagnosis. It is far from a Rare Disease and actually has been studied for many years!  It has been there in plain sight for study all along. In other countries these types of liposuction have been well underway for many years with great success, outcome is positive and brings huge relief to patients.

 

But we are expected to accept and believe like fools that we must wait. For how long? 

 

How much longer will a lady in her 50's have to wait to be told she won't make the medical requirements for surgery due to her age. Because NICE have made her wait for further studies? And then most likely, as it suggests in the report, specific types based on age and health will be considered for this type of surgery. So now age discrimination too.

 

And.... In the meantime, who is responsible for that lady’s health? Given there are NO Clinics for her to attend. Perhaps she will be referred to Vascular Doctors who will refer her to Lymphatic Doctors who will tell her it's not their issue to address. And just told to go away and lose weight. A common statement used by doctors. They do not understand the condition and she is left scared and suffering with no answers. 

 

Knees easily give way under all the abnormal adipose tissue pressure and this causes gate issues, which impact knees and arthritis develops. Then knee surgery is needed but ladies are told they cannot have surgery because of higher BMI.

 

That is the entire nature of the disease. Discrimination all the way! Surgery refusal, not because of weight, but because of illness. Lipoedema is inherited and it is not the fault of the sufferer. Just like any other disease treated on the NHS, it isn't anyone's fault. So, I beg the question - why is BMI not regulated? 

 

We have regulations for everything. To protect people. But who is protecting our best interests?  Who is regulating the Care of those living with Lipoedema?  Who is Caring for the massive impact this disease has on our mental health? Where are the clinics?  Where can ladies go to receive the correct care information from Gps? Who is responsible??  Why is the help not provided? 

 

As far as I am aware, there are only online media  groups which are a lifesaver for many. But where is the "immediate care"?  Where is the NHS readily available access? 

 

In the report, which is available online it states:

 

“3.8 The committee noted that this condition is distinct from obesity and lymphoedema”

 

A good starting point would be to correct this >  https://www.hee.nhs.uk/search/site/lipoedema

 

The truth is, nobody is there for ladies with Lipoedema. Surely, someone has to be accountable? Years of ladies being undiagnosed, misdiagnosed, the massive amounts of guilt and shame, ladies unheard, untreated, mistreated, discriminated against, such a sad lack of Care. 

 

We have been judged by appearance and not by facts. Lipoedema looks like obesity but it is not. Lipoedema is a disease and it certainly isn’t our fault. We are being punished with a disease that's been left untreated and neglected for years. What does the future look like for any of us if the health system decides to pick and choose who is entitled to medical care based on costs. 

 

Because that is what this is. Dressed up in the idea that our health needs their Gold standard of excellence to approve an operation that is already a gold standard in other countries.

 

We pay into the NHS. We deserve their care. Lipoedema is a very real disease. Clinicians use prejudice judgement based on observation, and that observation being one of obesity, it’s high time Lipoedema was given the respect, the education, the research, the time, conservative treatments, surgery and the medical expertise that is provided to all other chronic progressive diseases.

 

If you have read this article and feel you have not been given the correct care for your Lipoedema please put your complaint in writing to the NHS

 

Thank you for reading.