On Thursday 24 January, Emma contributed to a debate in Parliament on ‘Appropriate ME Treatment.’ Using the example of her constituent, Barbara Kell, she detailed the suffering of those with the illness being disbelieved about symptoms, receiving the wrong treatment and hoping for answers.
Then last month on
You can watch her full contribution to the debate on ME here and read the transcript here, and you can watch Emma’s contribution to the debate on NICE appraisals here and read the transcript here.
Here are extracts from her speeches:
“For someone who knows how unwell they are, there must be nothing worse than being told that it is all in their head and being sneered at by the very professions and organisations that should be supporting them. The constant quest to be believed and the desperation of just wanting some answers was summed up powerfully by my constituent, Barbara Kell. She described the endless rolling of eyes by some GPs and the frustration of others who wanted to help her but knew they would be hauled up in front of the General Medical Council if they did. Barbara told me that she is living “half a life”, and that she grieves for her past. She said she is missing out on so much, including time with her grandchildren—I can testify to the House that they are gorgeous little girls. Like thousands of others, Barbara wants and deserves to live in a country where the Government properly fund research; where treatment helps and does not hinder; where support from the state does not come at the cost of dignity; and where people actually listen to her. Right now, that is not the case.
Barbara told me that every time she went for blood tests, which were of course the wrong ones, and the results came back, she was actually hoping it was something like cancer, just so that she could put a name to the intense pain that she was feeling, get the right treatment, and know whether she was going to live or die. For the sake of my constituent Barbara and the 250,000 others affected, I hope that the Minister is really listening to what is being said today and is ready to give some justice and comfort to those who have been ignored for decades.”
NICE Appraisals Debate:
“Many sufferers also need to take an unbelievable number of tablets each day—tablets that are large and difficult to swallow. My constituent Harvey Parker has PKU. He is 15 years old and takes a staggering 65 of these tablets every single day. Although it is a distant memory for some of us, I am sure we all remember how difficult it is being a teenager, with that want to fit in and not stand out. Harvey told me that Kuvan would help him lead a more “normal” life.
“Eating out and sharing food with others is an important part of socialising and something that most of us do without thinking, but many places do not cater for Harvey’s needs, and he ends up feeling “embarrassed”, “isolated”, “angry” and a “burden”. He said that when he has been out with his mates on a weekend, he tells his mam and dad that he has not eaten because he was not hungry, when really it was because he could not find anything that he could eat. Harvey told me:
“I don’t really talk to any of my friends about PKU as I get embarrassed and when I’m with my friends with no tablets to take, blood tests to endure or bland, unpalatable foods then I am just Harvey, one of the lads and not that boy with the rare invisible condition that no one has ever heard of.”
It is clear to see how access to Kuvan and the more relaxed diet that would follow could improve Harvey’s life. It has improved the lives of others who have taken it, so why is it being denied to so many sufferers?”