Drop-in: FND Awareness
/Alan Brown MP for Kilmarnock and Loudoun joined FND Hope UK’s inaugural Parliamentary Awareness Day on Wednesday, to discuss the action needed to deliver better care and support for those living with FND in the UK.
FND is a neuropsychiatric condition estimated to currently impacted between 50,000 and 100,000¹ adults and up to 20,000 young adults under the age of 16 in the UK². The condition is characterised by a problem with the functioning of the nervous system and how the brain and body send and receive signals. The disruption to the signals is like letters being sent to the wrong address, despite having the correct label.
FND patients live with life-changing symptoms, similar to Parkinson’s Disease and long-term disability comparable to that with MS³⁴⁵⁶. Historically it has been a marginalised illness, often falling down the gap between the artificial divide between neurology and psychiatry.
FND Hope UK recently surveyed, through a Freedom of Information request, all of the Clinical Commissioning Groups and Health Boards in the UK as to their current provision of multidisciplinary rehabilitation for people with FND. The charity found that 50% of UK health boards had no specific agreement to treat FND.
This means that people living with FND may not have access to the care and treatment they need, because of where they live.
FND Hope UK held the inaugural Parliamentary Awareness Day to highlight these issues and discuss what can be done to better support the FND community with Members of Parliament.
The MP also signed up to the charity’s declaration, committing to support steps towards:
1. A dedicated FND care pathway at every UK neuroscience centre, which reflects the National Neurosciences Advisory Group (NNAG) optimal care pathway
2. The development of FND guidelines by both NICE and SIGN, to ensure consistent care is available across the country
3. Increased training in FND for healthcare professionals, to raise awareness of FND signs and symptoms and ultimately improve diagnosis
Attending the inaugural Parliamentary Awareness Day, Mr Brown said:
“I am delighted to have learnt more about FND Hope UK’s work towards a dedicated FND care pathway at every UK neuroscience centre and have the opportunity to hear directly from people living with FND about the impact the condition has.
“I was staggered to hear it affects up to 100,000 adults and 20,000 young adults in the UK. Those affected can experience life-changing symptoms similar to Parkinson’s Disease and long-term disability comparable to that of MS.
“When I shared this on Facebook, a constituent got in touch to say that she has been diagnosed with FND and it meant a lot to her that this drop in was taking place. It just goes to show how much this really means to so many people - we must do everything we can to play our part and raise awareness.”
Drop-in: World Cancer Day 2023
/Alan Brown MP for Kilmarnock and Loudoun marked World Cancer Day at a special Cancer Research UK event at Westminster this week about the future of cancer care.
Taking place on the 4th February each year, World Cancer Day is an international initiative which inspires individuals and communities to unite against the disease.
The representative for Kilmarnock and Loudoun met with researchers about the life-saving work taking place in labs across the UK, along with the charity’s volunteer ambassadors who share their experiences of cancer to help inspire and inform the decision-makers who can make a real difference to how the disease is tackled in the UK.
World Cancer Day also saw the end of Cancer Research UK’s 20th anniversary year. The charity has been holding events over the last 12 months to celebrate the progress made in beating cancer, thanks to the long-term dedication of its supporters and campaigners.
Commenting, Mr Brown said:
“We’ve come a long way in the fight against cancer, but there’s so much further to go. The research charities such as Cancer Research UK fund is vital to help unlock new and better ways to beat the disease, but it’s also crucial that politicians work together to ensure the patients of today and tomorrow have the best possible chance of survival.”
Head of Public Affairs at Cancer Research UK, Shaun Walsh, said the support of parliamentarians is key to help transform the prevention, diagnosis and treatment of cancer across the UK.
He added:
“The theme of World Cancer Day this year is closing the care gap and it’s never resonated more loudly, because beating cancer means beating it for everyone.
“Whether it’s helping to prevent 4 in 10 cancers by backing measures such as our #SmokefreeUK campaign, or ensuring Governments have dedicated, long-term plans for tackling cancer, politicians can make a big difference – days like this are important reminders we all need to work together to beat cancer.”
For more information visit cruk.org
Onthank Street Surgery
/On Friday (27th January) I was delighted to take part in my first Street Surgery of 2023. I was joined by two of my staff members and Cllr Elaine Cowan as we chapped more than 200 doors across Craufaurdland Road, Kingswell Avenue and Crofthead Avenue.
It was great to be out and about and talking to constituents on their doorsteps about matters both locally and nationally. Street Surgeries are a fantastic way to engage with my constituents as I try to get away from the stigma that politicians only chap doors at election time.
Pre-covid this was a staple of my constituency engagement, and it is certainly a feature which will be apparent this year as I aim to knock on doors across Kilmarnock and Loudoun.
When I have advertised these in the past, at times, people have gotten in touch asking why I am not going to a certain estate or area within the constituency. I have been to several estates across the constituency and there is a reality I cannot be everywhere at once.
But this system allows me to speak to way more people than simply holding a surgery in one venue, hoping people will turn up. Meanwhile, standard-type surgeries and my office remains open for enquiries as well. Keep an eye out for various activities in the coming months.
Visit: Virgin Money (National Databank)
/On Friday (27th January), I was delighted to meet with members of Virgin Money and discuss their plans to eradicate digital poverty through their partnership with the Good Things Foundation.
It was great to hear from Vicky, Colin, Julie and Grace about the plans that are in place through the National Databank to try and help those in data poverty. Kilmarnock’s Virgin Money store is one of 16 across the UK distributing free O2 sim cards to those who need them.
For those struggling, anyone over the age of 18 can drop into the store at the Foregate and approach them for six months of free data. We all know how important the internet and connectivity are in this day and age - everything is online. Be it banking, working, applying for jobs, general information and other day-to-day life tasks.
We have to raise awareness and get this information out there. I am well aware of the irony of promoting this on social media etc. when we are trying to get this information out to digitally excluded constituents, but it is important we promote it and hope word of mouth gets it to those who need it.
My office will start referring constituents and we will also distribute the information to the local authority and community councils.
Picture L - R: Grace Smith (Public Affairs Analyst), Vicky Stephen (Customer Financial Wellbeing Manager), Alan Brown MP, Julie Goodwin (Store Manager), Colin Patterson (Cluster Manager).
Press Release: Holocaust Memorial Day
/This week, Alan Brown MP signed the Holocaust Educational Trust’s Book of Commitment, in doing so pledging his commitment to Holocaust Memorial Day.
By signing the book, the representative for Kilmarnock and Loudoun is honouring those who were murdered during the Holocaust as well as paying tribute to the extraordinary Holocaust survivors who work tirelessly to educate young people today.
Holocaust Memorial Day falls on 27th January every year, the anniversary of the liberation of the infamous former Nazi concentration and death camp, Auschwitz-Birkenau, in 1945. Across the UK – and the world – people will come together to remember the horrors of the past.
In the lead-up to and on Holocaust Memorial Day, thousands of commemorative events will be arranged by schools, faith groups and community organisations across the country, remembering all the victims of the Holocaust and subsequent genocides. The theme for this year’s commemorations is ‘Ordinary People’.
On Holocaust Memorial Day we also remember and pay tribute to all of those persecuted by the Nazis, including Roma and Sinti people, disabled people, gay men, political opponents of the Nazis and others. We also remember all of those affected by genocide since, in Cambodia, Rwanda, Bosnia and Darfur.
After signing the Book of Commitment, Alan Brown MP commented:
“Holocaust Memorial Day is an important opportunity for people from Kilmarnock and Loudoun, as well as further afield, to reflect on the darkest times of European history.
“By signing the book I pledge to remember the six million Jewish men, women and children who were murdered in the Holocaust, alongside the millions of other people killed under Nazi persecution of other groups and in all subsequent genocides.
“As the Holocaust moves from living memory to history, we must ensure we never forget the horror these people endured and mark this significant day. “
Also commenting, Karen Pollock CBE, Chief Executive of the Holocaust Educational Trust, said:
“On Holocaust Memorial Day we remember the six million men, women and children who were murdered by the Nazis and their collaborators, simply for being Jewish, and we pay tribute to the incredible survivors, many of whom still share their testimony day in and day out to ensure that future generations never forget the horrors of the past. We also remember that antisemitism did not start or end with the Holocaust, we must all be vigilant, and speak out whenever it is found.”
