UK House of Lords/ House of Commons Questions

Layla Moran Liberal Democrat, Oxford West and Abingdon
To ask the Secretary of State for Work and Pensions, how many people with myalgic encephalomyelitis were assessed for personal independence payments in each of the last five years; and what proportion of those people were found to be eligible for those payments?

Sarah Newton The Minister of State, Department for Work and Pensions
The Department does not record disabling conditions of Personal Independence Payment (PIP) claimants at registration stage. Primary disabling conditions are recorded on the PIP Computer System only for those claimants who undergo a face to face or paper based assessment.

Although Myalgic Encephalomyelitis (ME) is not recorded separately, we can provide award and disallowance statistics after assessment for claimants whose primary disability, as recorded on our systems, is Chronic Fatigue Syndrome (CFS).

The table below shows the annual volume of awards and disallowances where the claimant’s primary disabling condition was recorded as CFS and a face to face or paper based assessment took place.


table here:
https://www.theyworkforyou.com/wrans/?id=2017-12-12.119031.h

 

Interesting - about 40% are denied. I'm curious to know what the rates are for similarly disabling diseases like MS.

 

Same question here.
On first glance these figures look quite concerning to me but it could easily be consistent with other comparable diseases (in which case it's just PIP as a whole that's the problem).

 

http://www.parliament.uk/business/p...s/written-question/Commons/2017-12-19/120492/

David Drew

To ask the Secretary of State for Health, what steps he has taken to ensure that the training of GPs includes the latest evidence on how to diagnose and treat ME.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-12-19/120493/

David Drew

To ask the Secretary of State for Health, what recent research his Department has commissioned on the diagnosis and treatment of ME.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-12-21/120854/

Martyn Day

To ask the Secretary of State for Health, what steps his Department is taking as a result of the latest evidence on the diagnosis and treatment of Chronic Fatigue Syndrome.

 

Reply:
David Drew Shadow Minister (Environment, Food and Rural Affairs)
To ask the Secretary of State for Health, what recent research his Department has commissioned on the diagnosis and treatment of ME.
Jackie Doyle-Price The Parliamentary Under-Secretary of State for Health
The Department, through the National Institute for Health Research, has recently commissioned one project on the treatment of symptoms of Myalgic Encephalomyelitis (ME). Professor Esther Crawley, of the University of Bristol, was awarded funding for research entitled, ‘Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK’. This project began in May 2016. Full details of the research can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research

 

The profile of ME in parliament has clearly gone up given the frequency of questions we are now seeing.

 

True, but Esther bl&*dy Crawley?!

 

You'd think they'd get tired of throwing money away on treatments proven not to work. Unfortunately, they don't seem to be bright enough to figure out that that's what is happening.

 

Given the UK political cycle it seems like a good plan, from their perspective.

They don't care about any expenditure more than 5 years away, funding "trials" that are cheap, fantastically cheap, compared with actually committing the resources needed and warranted, when if it all goes wrong, it's someone else's head on the block, seems like the smart move to me.

Not the sensible move, not the ethical move, not the right move, but given that virtually no one else gives a damn about this issue, there is literally no downside for them.

yeah - at some point, someone's gonna get stuck with a bag full of excrement, but as long as it's not them...it's pass the parcel time, its been pass the parcel time for 40 years, and it's been a good game, it's worked very well for them.

 

That reply tells us all we need to know.

On checking the link it is interesting to see in the "Application plain English summary", that the Plain English is not plain enough for me to understand.

It says that "children with CFS/ME have fatigue that stops them going to school or doing other activities for more than three months." It is unclear whether the "or" is to be construed conjunctively or disjunctively. Does it mean that they cannot go to school and in addition they cannot do other unspecified activities? Or does it mean that they either cannot go to school or, alternatively, they cannot do some other activities? If the definition is so inexact how can it be applied or understood consistently?

It goes on to say "In England up to 2 in 100 children have CFS/ME and 1% of secondary children miss a day a week because of it."

One would expect the 1% to be more seriously affected than the 2%,

It seems that on the one hand children have to have an illness that keeps them off school for three months or more, which one would interpret as being in a single block of absences, but on the other hand 1% of sufferers maybe so classified afer missing less than one day per week at school. How is the three months absence calculated? Is it a single block of illness with further ongoing absence (which would look like clear ME) or are the days absences over a period totted up and when they amount to 90 days that constitutes ME. Who knows?

 

Answer to

Dr David Drew

To ask the Secretary of State for Health, what steps he has taken to ensure that the training of GPs includes the latest evidence on how to diagnose and treat ME. [120492]

Steve Brine

The postgraduate training curriculum of doctors is set by the relevant Royal College and has to meet the standards set by the General Medical Council (GMC). It emphasises the skills and attributes that a doctor must develop in order to ensure accurate and timely diagnoses and to develop a treatment plan to meet patients' needs.

The GMC published revised standards for postgraduate training curricula in May 2017. These provide an integrated standards framework for the development, approval and provision of postgraduate medical education and training in the United Kingdom.

 

This was an answer to question 120493

 

Re : [120492] - but could apply to virtually all the answers given.

Does this, in fact, answer the question?

I propose a new question - along the lines of asking if people understand the meaning of a question, any question, and that specific words are an attempt to extract specific information, not just a general statement, from whatever the government's version of wikipedia is.

 

http://www.parliament.uk/business/p...s/written-question/Commons/2018-01-05/121190/

David Drew

To ask the Secretary of State for Health, what steps his Department is taking to ensure that medical students are acquiring the basic clinical skills to make a diagnosis of ME/CFS.

 

Well that's an easy question - even I can answer it. Nothing.

 

Predictable reply:

Stephen Barclay

The standard of medical training is the responsibility of the General Medical Council, which is an independent statutory body.

This includes setting the standards of education at undergraduate level and approving medical school curricula, which emphasise the skills and approaches that medical students and newly qualified doctors must develop in order to deal effectively with whatever is presented to them and ensure accurate and timely diagnoses and treatment plans for their patients.

 

What are we paying them for?
Same as usual, buck passing.

 

Apart from the bucks we are paying them of course. They keep those.

 

http://www.parliament.uk/business/p...nts/written-question/Lords/2018-01-11/HL4650/

The Countess of Mar

To ask Her Majesty's Government whether teachers who become Designated Senior Leads for Mental Health to oversee the approach to mental health and wellbeing in schools will be trained to distinguish children with anxiety, depression or behavioural problems from children who have myalgic encephalomyelitis (chronic fatigue syndrome) as a primary cause of their illness.