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New plan to tackle rare diseases in Wales

Wales’ first ever plan to tackle rare diseases is launched today.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. Credit: Angelika Warmuth/DPA/PAImages

It sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. They can range from life-limiting illnesses to manageable conditions, which do not affect daily living. There are around 150,000 people affected by such diseases in Wales.

Examples include Sickle Cell, which is a disease arising out of genetic problems, and Spina Bifida - a disease arising out of deficiencies or exposures to substances during pregnancy.

"This is the first time Wales has developed a plan to improve the experiences of people living with rare diseases and it brings together a number of recommendations designed to improve coordination of care and lead to better outcomes for people.

To this end, we are keen to see real partnership across services, agencies, and above all between individuals living with rare diseases, their carers, patient organisations and the NHS.

Patients with these conditions can suffer greatly and we are determined to provide the best care we can for them. I expect this plan to make a real difference."

– Vaughan Gething, Deputy Health Minister

Ambulance response times - 'worst on record'

Only 42.6% of ambulances in Wales got to the most life threatening calls within 8 mins according to Welsh Government figures published today. The target is for 65% of them do to so. The figures for November were 51%.

Credit: PA

In certain parts of Wales the response figures were even worse:

  • Torfaen - 28.3%
  • Rhondda Cynon Taff - 29.9%

Half of Welsh local authorities performed below the 42.6% average figure. The best performing area, Conwy was still below the national target of 65%.

The chief executive of the service Tracy Myhill says "We completely appreciate that this presents an unacceptable level of service delivery across the whole health and social care system."

The Welsh Conservatives called the figures "the worst on record".

More evidence of a bleak mid-winter for the Welsh NHS, these are truly horrific figures – the worst on record – which must set alarm bells ringing for Labour Ministers who have inflicted record-breaking cuts on the Welsh NHS.

– Darren Millar AM, Shadow Minister for Health


  1. Nick Powell

Poll shows concerns about Welsh NHS

Just over half the people questioned in an ITV Cymru Wales poll are confident that the Welsh NHS will give them a high standard of healthcare when they need it. The gap between those who are confident and those who are not is now just 10%

Credit: YouGov/ITV/Cardiff University Jan 19-21, Sample: 1,036

The poll result suggests that a year of bad headlines has shaken confidence in the service. A similar poll in October 2013 found 72% confidence in the Welsh NHS. Satisfaction with the treatment people have actually received remains high, at 72%, though that's down from 82% in the previous poll.

Credit: YouGov/ITV/Cardiff University Jan 19-21, Sample: 1,036

The Welsh Health Minister has welcomed the overall result as a sign of continuing support for the NHS and the way that it's run in Wales.

This poll shows once again how people across Wales value and respect the approach we have taken in respect of the NHS, which does a remarkable job in providing excellent standards of care, free at the point of need for all people in Wales. Research continually shows people across Wales have confidence in their NHS.

– Health Minister Mark Drakeford AM

The latest poll was also conducted in England, where there were higher levels of confidence in the NHS and satisfaction with the treatment that people had received.

Credit: YouGov/ITV/Cardiff University Jan 19-20, Sample: 1,344
Credit: YouGov/ITV/Cardiff University Jan 19-20, Sample: 1,344

Welsh NHS gets extra £40 million for winter pressures

The Welsh Government is giving the NHS an extra £40 million to help it cope with winter pressures on the service. It's equivalent to the £700 million that the UK Government has given to NHS England. The announcement follows a period of sustained pressure over the Christmas and New Year period.

  • GP out-of-hour services had their busiest festive period ever
  • The Welsh Ambulance Service experienced unprecedented demand
  • Hospital emergency departments reported an increase in patients with acute conditions, complex needs and dependency.

This additional investment in our health service will help our NHS deal with the significant pressures the service is facing – pressures that are being experienced across the UK as a result of increased demand from an influx of sick patients. Winter is a very busy period for our health, social care and social services – but our urgent and emergency care services, in particular, are seeing significant extra demand on their services.

I want to thank staff who are working tirelessly, often in difficult situations, to ensure that those people who have needed urgent and emergency care have received high-quality treatment and services and have been treated with care and compassion.

– Health Minister Mark Drakeford AM

Deputy Health Minister Vaughan Gething has appealed to the public to consider whether they need to go to A&E when they are injured or unwell. He said people should ask themselves if another local health service can help or if they can look after themselves with advice from NHS Direct.


  1. Nick Powell

Details of NHS pay offer revealed

Welsh NHS staff are being given details of an improved pay offer that's led Unison to call off a half-day strike planned for Monday. It includes a £187 lump sum and a commitment by the Welsh Government to a 1% pay increase next April, in addition to any increments. The full offer is as follows:

  • £187 (An increase on the £160 previously offered)
  • A 1% rise from next April, on top of any annual increment
  • All workers to receive at least the living wage of £7.85 an hour from January. The recent increase in the living wage means that this will now benefit 4,500 people, who will get a rise of between 2.5% and 5%

For the lowest paid of our members, it is in fact a very good deal

– Dawn Bowden, UNISON Cymru/Wales Head of Health

Unison is not actually recommending the deal to its members but is telling them that it's the best that can be achieved through negotiation. It's a two year deal, with pay strategy from 2016 onwards looked at by an NHS Wales Workforce Commission.

The union says it makes its pay claims for the UK as a whole but as health is devolved, different outcomes are always possible. This year a pay review recommended a 1% rise. This was accepted by the Scottish Government but the UK government said that it would not pay it in England to workers getting an annual increment.

Welsh Government hopes for NHS pay deal

The Welsh Government is not releasing details of the improved pay deal that it's offered NHS staff. The offer has led to Unison calling off a half-day strike planned for Monday. ITV News understands that the proposal the union will put to its members involves a slightly bigger payment than the £160 previously offered to all Welsh NHS staff apart from doctors, dentists and senior managers.

We are pleased that Unison has suspended the proposed industrial action whilst they consult their members. These discussions have shown the progress we can make together when good industrial relations are maintained. We await the result of the consultation which we hope will deliver a positive response. Our priority continues to be to maintain jobs at the frontline of NHS Wales against a backdrop of severe cuts to our budget.

– Welsh Government Spokesperson
  1. Nick Powell

Health workers may get separate pay deal in Wales

A new pay offer to NHS workers from the Welsh Government means that the Unison union has called off a half-day strike planned for next Monday. The details of the improved offer have not been released but it means that industrial action, due to hit the English NHS later this month, may be avoided in Wales.

These new proposals are a significant improvement for our members and the result of weeks of tough negotiations with the Welsh Government. It is right that our NHS members now have a say and we will consult our members on the new proposals.

– Dawn Bowden, UNISON Cymru/Wales Head of Health

The dispute began when the UK Government rejected a pay review recommendation of a 1% increase and the Welsh government decided that it couldn't afford to pay the rise either. Instead it offered a one-off payment of £160 to all Welsh NHS staff apart from doctors, dentists and senior managers. The 2,400 lowest paid workers got more -up to £470, as a result of a commitment to at least pay the living wage.

Unison rejected that offer and called a strike ballot, 77% of the members who took part voted in favour. The union argued that the workforce could not be expected to plug the funding gap in the Welsh NHS.

Unions have traditionally been reluctant to see an end to pay being set on a UK-wide or England-and-Wales basis. But today's announcement from Unison, comes after the Fire Brigades Union in Wales called off a strike over its pensions dispute. The Welsh Government has offered to consult on a possible solution. Firefighters still walked out in England, where the union felt the government was not willing to compromise.

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