This afternoon I sent a cross-party letter to BioMarin, calling on them to make Kuvan more affordable so PKU patients in the UK are able to access it. It is about time BioMarin put patients before profits.
This follows the petition handed in to BioMarin’s London HQ last month, signed by more than 16,000 people, which asked that BioMarin make Kuvan affordable to the NHS. With BBC Newsnight recently covering the problems those with PKU face, we believe this issue is starting to get the attention it deserves.
You can read more about the campaign here:
Over last weekend, I attended some moving Remembrance Day services across the Blaydon constituency, to remember those killed and wounded in conflict, as we marked 100 years since Armistice Day. On Friday morning, pupils from Crookhill school joined residents and local councillors and myself at a service where we remembered those from the Crookhill area who gave their life. In the afternoon, I joined pupils from Dunston Hill Primary School, St. Philip Neri RC Primary School and Kingsmeadow School in a service at the War Memorial in Dunston. Later that day, I attended the Community Remembrance Service at Lucy Street Methodist Church, Blaydon – where we saw a particularly poignant Tommy silhouette.
On Sunday, I joined residents of Whickham and was proud to lay a wreath at the Cenotaph. And later that afternoon, I took part in the Remembrance Service at the Metrocentre. Many other Churches and Communities across the constituency held their own services – from Chopwell to St Paul’s Church, Winlaton, and Birtley.
Thank you to all of you who took part in remembering all those who gave their lives in war and conflict.
Last week I had the pleasure of chairing the latest meeting of the All-Party Parliamentary Carbon Monoxide Group (APPCOG).
We looked at recent research, which found that those living in fuel poor and vulnerable households are more likely to be victims of carbon monoxide poisoning. The prohibitive costs of heating homes means that not only are they more likely to engage in dangerous behaviour – like using kitchen hobs or ovens to heat their homes, or not getting their appliances serviced as they can’t afford it. They are also often living in precarious housing situations where they feel like they cannot challenge their landlord or are hard to reach by professional services. If their vulnerability is health related, they are also more likely to spend more time in the home, increasing the likelihood of long-lasting effects from low level exposure.
It was troubling to hear some of the experiences people have had with this. I was therefore glad to have the opportunity to discuss what more can be done to help those worst affected by this. I’m look forward to more opportunities to work with APPCOG in the future, and hopefully help those who need it most.
We had an excellent drop-in session with the Big Lottery Fund last Friday in Birtley. The fund have been keen to inform local organisations in the constituency of the funding opportunities available to them. It was an excellent to see so many interested constituents attend.
I will be hosting another drop-in session with the Big Lottery Fund on Friday 2nd November, 10:00-12:00, for those unable to attend the first session. This will take place in Blaydon Library.
For more information on the funding opportunities available to local organisations, follow this link:
Last week I spoke in a debate on Deaf Children’s Services. This followed a debate I led earlier in the year, which proposed the development of a GCSE in British Sign Language. Much of that debate was about giving deaf children the best possible chance of communicating with other people; and getting the best educational outcomes. Sadly, attainment evidence shows this is not happening at present.
I have been keeping an eye on the services available to deaf children -both nationally and in my constituency- and I am disappointed to find that once again this government is ignoring the evidence.
Latest figures show that services available to deaf children are being significantly reduced across the country. Local authority spending on specialist education services for deaf children has been reducing since 2011. This reduction means the futures of deaf children are being “stolen” – according to the National Deaf Children’s Society.
The attainment gap between deaf children and other children is widening. This is not a gap of intelligence but of the support and the tools to communicate and understand as other children do.
Because most schools do not have the knowledge or skills to support deaf children themselves, it is essential that deaf children have access to the specialist support necessary for their learning and development. Improving access, rather than reducing it, is the only way we can give deaf children the start in life they deserve.
I visited Brightsparks Nursery in Crawcrook last weekend, and was delighted to see all the fantastic work staff there are doing to make it an “Outstanding” rated Nursery.
Unfortunately, maintaining this standard is now going to be very difficult. The Government’s new funding regime has created a major shortfall for many nurseries -Brightsparks included- and staff are very worried about making ends meet.
I am therefore going to be doing what I can to put pressure on the Government to reconsider this appalling decision.
Today I asked the Minister for Children, Young People and Families how nurseries are supposed to remain open when facing such a shortfall under the new funding regime.
After staff at the nursery had told me how difficult they were finding it to make ends meet, I was determined press the Minister on this.
I hope the Minister will now take a thorough look at the costings of the new funding.