Rare Disease Day 2010 was on Sunday the 28th of February and the theme was ‘Patients & Researchers: Partners for Life’ and raised awareness of the need for research into rare conditions and development of treatment and support for people living with them.

Nerys Evans AC gydag Alan Thomas yn y Senedd/Nerys Evans AM with Alan Thomas in the Senedd

A rare disease is one that affects about one in 2,000 people. There are more than 6,000 different rare conditions. Rare diseases are surprisingly common – 175,000 people in Wales (3.5 million in the UK) – live with a rare condition at some point in their lives.

Rare Diseases are diverse in severity and symptoms presented by patient. People living with these conditions, however, report similar issues around diagnosis and treatment. It can take patients years to achieve a diagnosis, leading to a deterioration of the condition, inappropriate treatment and medication and significant distress for them.

Rare Disease UK is campaigning for a strategy in Wales and across the UK for integrated service delivery for rare diseases to aid speedy diagnosis and effective treatment and care for people living with rare conditions.

Buddug Williams of Rare Disease UK, said:

“There are tens of thousands of people in Wales and millions of people in the UK living with a rare condition. For many, there is little knowledge on how to treat and manage their condition and scientific research is lacking. Raising awareness of rare diseases and the need for a co-ordinated approach for the diagnosis, treatment and research of rare diseases is hugely important.”

Alan Thomas from Llanboidy, Carmarthenshire is a member of Ataxia South Wales and attended the Rare Disease Day Wales event, said:

“It is great that people with rare conditions come together to raise awareness of what we need to help manage our conditions. We hope the Welsh Assembly Government recognise that together we are a big number of people and it is important to make sure we get the health services we need, and we can continue to learn more about different conditions through research.”

Nerys Evans AM for Mid & West Wales, said:

“I support Rare Disease Day and Rare Disease UK’s work. Many people living with rare conditions have conditions that need specific clinical management and support. It is vital we can provide the best care for people who need it, regardless of where they live.”

In Pembrokeshire the Hermon Community Resource Centre has been awarded £195,600, Steynton Parish Church £91,340 and the Phoenix Community Centre in Goodwick has been awarded £190,000. This funding will go towards various improvements and developments.

Plaid’s Nerys Evans said:

“This investment is very welcoming and will have a beneficial impact upon these local communities and the day to day lives of local people. There is no doubt that the Community Facilities and Activities Programme is making a real difference to community and voluntary groups at a grass roots level. You only have to look at the many projects from earlier grants that have now come to fruition, and I am certain that this new funding for these latest projects in Pembrokeshire will further contribute to the regeneration of these communities.

The Community Facilities and Activities Programme is open to community and voluntary organisations and provides funding for the provision of facilities and activities within communities in order to engage with local people – which ultimately will help promote the regeneration of our communities.”

During the event Nerys signed the Greyhound Welfare Advisory Board’s large banner stand pledging her support.

Plaid AM Nerys Evans said:

“I fully support this campaign and will be taking the matter up with the minister. There is no doubt that the majority of people provide excellent care for their greyhounds but of course there are certain cases which are a cause for concern. After a greyhound stops winning races many of them are abandoned or killed and this is unacceptable. I know that the Welsh Assembly Government will look at this issue seriously because it’s important that we ensure the welfare of all animals.”

Electric shock collars work either via a remote control or automatically when a dog barks or enters a pre-defined perimeter shock zone.

Mid and West Wales AM Nerys Evans said:

“I very much welcome this announcement by the Rural Affairs Minister Elin Jones which has come following a third consultation on the draft legislation. The majority of responses support the view that electronic dog collars should not be used and that there are more effective training alternatives. Also, a recent YouGov survey on this issue found that 70% disapproved of the use of electric collars on dogs, with only 9% in approval.

The Welsh Assembly Government takes the welfare of animals very seriously and there is no doubt that Wales is leading the way on this important welfare issue.”

A few weeks ago I attended the Welsh Assembly’s Cross Party Group on Muscular Dystrophy (CPG) session where over 40 patients and families related their shocking experiences of services.

During the meeting we heard that there is no regional care advisor in Wales, despite some regions of England having up to five people in similar posts. This means there is no one to turn to for advice and support about equipment, home adaptations, care and financial issues.
It’s also worrying that some patients are waiting a huge amount of time for basic equipment such as wheelchairs and many end up buying these themselves, which cost thousands of pounds. We were told that one man has been sleeping in his wheelchair for 11 years because his family cannot find a suitable bed.

The meeting, chaired by Dr Dai Lloyd AM, was a chance for Welsh families living with muscle disease to give evidence about their experiences of health services. This evidence will be used to form the Cross Party Group’s thorough investigation of muscle disease services in Wales. This will also include recommendations for how services can be improved across Wales.

An announcement was made at the end of meeting that the report into muscle disease health services in Wales will be called the Thomas Report. This is in recognition of Ray Thomas from Neath, a dad who lost one of his sons to muscle disease and has spent over 30 years campaigning for better muscle disease health services. Over the coming months the Cross Party Group will be gathering evidence about muscle disease healthcare in Wales to produce their final report later in the year.

It is clear that Wales is lagging behind much of the UK in the specialist neuromuscular services it provides, and is the only country in the UK with no muscular dystrophy care advisor. It is vital to ensure that all patients across Wales have access to timely specialist diagnosis, assessment, treatment and on-going care. The level of specialist care in Wales is currently unacceptable and inadequate.

For more information about muscle disease and the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.

New legislation will make a difference for Carers

A recent statement by the Deputy Minister for Social Services signals the beginning of the end of the long wait for new legislation for carers. As a party we have campaigned for years for the rights of carers to be improved and back in early 2008, the party received cross party support to introduce legislation to improve the rights of Carers. These proposals were then adopted by the Deputy Minister as part of her legislative package for carers and this week it has been announced that the process is now at the measure stage.

In the constituency of Preseli Pembrokeshire there are 8,302 people providing unpaid care with a further 8,295 in the constituency of Carmarthen West and South Pembrokeshire. Plaid has campaigned for years for the rights of carers to be improved. Many people who provide unpaid care, don’t see themselves as carers, they just think they’re doing their duty as a spouse, parent or child and as a result they don’t apply for the help and support that they are entitled to.

Therefore, I am absolutely delighted that the planned legislation to help carers in Wales will soon be a reality. I am confident that it will make a real difference to carers’ lives. The new law will ensure that it is easier for carers to access the services and support that are rightfully theirs, services and support that they are often unaware of.
I am only disappointed that thanks to the cumbersome legislative process that Wales is currently burdened with, it has taken us 2 years to get this far. This is a concrete example of how a yes vote in the referendum could make a real difference to people lives.

Six nations and domestic abuse
With the Six Nations rugby well underway I along with the rest of the country am enjoying supporting the team and hopefully enjoying a successful few months. Unfortunately, for many the Six Nations tournament is a time of misery. I would urge women not to suffer domestic abuse in silence as police figures show that during major sporting events incidents of domestic abuse increase because people are drinking more. Also, last year Police revealed that cases of domestic violence soared 79 per cent when Wales played England.

There are a multitude of issues that lead to domestic abuse. It is not just because of alcohol or a game of rugby. But excess drinking at times, such as during the Six Nations and over Christmas, can act as a catalyst for abuse. Although there is an increase in the number of cases of domestic violence at certain times of the year it is still a problem all year round and in total over the last three years Dyfed Powys Police received nearly 9,000 complaints of domestic violence.

Abuse and violence in the home is never acceptable under any circumstances. There is help and support available for women through the 24-hour domestic abuse helpline.
The 24-hour Wales Domestic Abuse helpline can be contacted on 0808 80 10 800 while more help and information is available online at www.womensaid.org.uk

Be cautious with TV gold buyers
A recent Which? report found that Gold buying services advertised on TV often do not provide good value for money and recommended that they should be avoided. I know many people have been tempted recently to sell on gold in order to make a bit of extra cash or to help make ends meet in these difficult economic times. Often people go straight to buyers that advertise their services on TV without shopping around. It has become quite clear that these TV offers are often not as good as they seem, with high street jewellers often offering a much better price for gold.

‘Which?’ sent three pieces of brand new gold jewellery to four gold buyers that advertise on TV, three independent jewellers and three pawnbrokers. The TV gold buyer consistently gave the lowest quotes.

Therefore I would urge you to think very carefully before selling their jewellery to these TV gold buying companies and to shop around for the best deal. The research carried out by ‘which?’ showed that on average they paid 19% less than the prices offered by high street retailers. When people are in need of a bit of extra cash it is easy for them to be misled by the convincing adverts on TV. There is concern that these companies are taking advantage of people who are struggling to make ends meet and it’s important for people to be aware that there are better deals out there.

£17.4m investment to bring Welsh tourism up to date
I was very pleased to see the Welsh Government announce recently that a new £17.4m project to help the Welsh tourism industry benefit from the latest digital technology developments in areas such as on-line marketing, booking systems and business management is to be introduced. Plaid’s Heritage Minister Alun Ffred Jones said the aim was to help keep Welsh tourism businesses competitive. The funding is being drawn from the European Regional Development Fund, the Welsh Assembly Government and the private sector.

There is no doubt that this is a major investment for the tourism industry. Increasingly many people are going online to research, plan and book their holidays so we need to ensure tourism businesses in Pembrokeshire are competitive in this area. It’s vital for the tourism industry to embrace digital technology and online marketing to enable them to compete in the market. Hopefully the digital tourism project will help more businesses in the county exploit the latest technology and make the most of online opportunities.

These projects will ensure the tourism industry in Wales can get the maximum benefits from advances in technology to keep them competitive. But this is not just about online marketing. It will also be about making the most of technology to run businesses more efficiently and ensure the industry is in a strong position to capitalise on new digital opportunities as they emerge.

Over-60s to benefit from boiler scrappage scheme

It was recently announced that people in Wales aged 60 or over are set to benefit from a new boiler scrappage scheme. The new £2.5m scheme, targeted at those more vulnerable to fuel poverty, will come into force on 1 April this year and eligible applicants with an inefficient (G rated) boiler will receive £500 towards the costs of a new boiler.

This boiler scrappage scheme announcement by the Welsh Assembly Government will save hundreds of pounds for many householders who are currently suffering from fuel poverty. This additional funding underlines the Assembly Government’s ongoing commitment to tackling fuel poverty and with fuel bills set to rise 60% over the next six years it’s unacceptable in this day and age that old and vulnerable people have to worry about whether they can afford to heat their homes.

Unfortunately this is the reality for far too many people during these winter months. By Swapping a G-rated boiler for an A-rated replacement could save up to £235 a year and will also cut greenhouse gas emissions.

This initiative is now in its third year and the money will build on the success of this and the predecessor Safe Routes to School initiative. The schemes delivered to date have helped to improve accessibility within local communities and enhance road safety.

Plaid’s Nerys Evans said:

“I’m very pleased that Pembrokeshire has benefited from this scheme which will enable Pembrokeshire County Council to progress and substantially complete important projects in Monkton and Goodwick. Safe Routes in Communities initiatives are aimed at encouraging the use of sustainable modes of transport, such as walking, cycling and public transport for local journeys and this work is vital if we are to encourage more people to take the healthier options of walking or cycling.
This money will help take forward the One Wales Government’s commitments in terms of sustainable transport and I now look forward to seeing the completed work in Monkton and Goodwick.”

Fuel Poverty Awareness Day, run by National Energy Action (NEA), is a national campaign which aims to highlight the effects of living in a cold home on people’s health.

Mid and West Wales AM Nerys Evans said:

“Fuel Poverty Awareness Day is about helping people to understand the links between fuel poverty and poor health, and making them aware of the help that is available to ensue they are kept warm and well. This boiler scrappage scheme announcement by the Welsh Assembly Government will save hundreds of pounds for many householders who are currently suffering from fuel poverty.

This additional funding underlines the Assembly Government’s ongoing commitment to tackling fuel poverty and with fuel bills set to rise 60% over the next six years it’s unacceptable in this day and age that old and vulnerable people have to worry about whether they can afford to heat their homes. Unfortunately this is the reality for far too many people during these winter months. By Swapping a G-rated boiler for an A-rated replacement could save up to £235 a year and will also cut greenhouse gas emissions.”

Mid and West Wales AM Nerys Evans said:

“I’m very pleased to hear this news and hopefully this announcement will help improve mental health services for the future. I raised this issue with the Minister having received a great deal of casework from people across the region relating to the problems that they get trying to access mental health services and especially mental health services for young people. Although this announcement is very welcoming there is much more that needs to be done. It’s vital that we further improve mental health services and raise the profile of the importance of mental health services within the NHS.”

Nerys Evans, who won the ITV Campaigner of the year award in 2008 for her campaigning work on domestic abuse issues, said:

“There are a multitude of issues that lead to domestic abuse. It is not just because of alcohol or a game of rugby. But excess drinking at times, such as during the Six Nations and over Christmas, can act as a catalyst for abuse. Although there is an increase in the number of cases of domestic violence at certain times of the year it is still a problem all year round and in total over the last three years Dyfed Powys Police received nearly 9,000 complaints of domestic violence.

“Abuse and violence in the home is never acceptable under any circumstances. There is help and support available for women who are attacked through the 24-hour domestic abuse helpline. There is no need for women to suffer in silence and asking for help doesn’t mean they will be pressurised to take action if they don’t want to.

Wit Witnessing violence can also be very damaging to children and there is support available to them as well as their mother. I appeal to all rugby fans to enjoy the tournament but not to take out any frustrations on wives, partners and children.”

The 24-hour Wales Domestic Abuse helpline can be contacted on 0808 80 10 800 while more help and information is available online at www.womensaid.org.uk

Plaid AM Nerys Evans said:

“This is a major investment for the tourism industry. Increasingly many people are going online to research, plan and book their holidays so we need to ensure tourism businesses in Pembrokeshire are competitive in this area. It’s vital for the tourism industry to embrace digital technology and online marketing to enable them to compete in the market. Hopefully the digital tourism project will help more businesses in the county exploit the latest technology and make the most of online opportunities.”

Heritage Minister Alun Ffred Jones said:

“These projects will ensure the tourism industry in Wales can get the maximum benefits from advances in technology to keep them competitive. But this is not just about online marketing. It will also be about making the most of technology to run businesses more efficiently and ensure the industry is in a strong position to capitalise on new digital opportunities as they emerge.”