News from Scotland

Named Person Policy in Scotland launches 31st August 2016

The Scottish Government's Named Person Policy is set to be available nationally from 31 August 2016. Most children and young people get all the help and support they need from their parent(s), wider family and community, but sometimes, perhaps unexpectedly, they may need a bit of extra help. Many parents say that when they need help it's not available and they don't know who to go to. The Named Person ensures that there is someone who is responsible for helping them get the support they need if and when they need it. Read more about this scheme at 

15th March Edinburgh 2016 - National Conversation programme - Creating a Healthier Scotland

Rae McNairney, a patient representative from Scotland, gives a summary of the events she has attended:

The findings from all conversations that have been held throughout the country will be fed into the Scottish Governments National Conversation programme and the Rare Disease Oversight Implementation Group. The National Conversation was launched in August 2015 based on the theme of what matters to you when thinking about health and the future of health and social care services.

There were a small number of groups represented but the discussion was lively and worthwhile. The comments and concerns were very much what we have heard from people all over the country. Themes were how do we engage GP's/promote more physical activity/better diet and nutrition? How do we ensure all patients should have access to psychology services/family support /access to dietician/fatigue and pain management advice?

All the group agreed that Rare Disease Groups should communicate more as there is a great deal of information sharing which could be beneficial and money saving for charities. 

Tuesday 8th March 2016 at Scottish Parliament - Cross Party Group Meeting on Rare Diseases

This was the last planned meeting of the Group before the upcoming elections take place.

Feedback was given on the Rare Disease Day Reception, which took place at the Scottish Parliament on the 1st March. The event was extremely well received by a large number of attendees representing a wide range of charities. Practical suggestions were made as to how we can further improve the event and thanks were expressed for an excellent evening.

A report from the UK Rare Disease Forum (Executive Summary) on ‘Delivering for patients with rare diseases : Implementing a strategy (February 2016)’  was distributed. The full report is available here.

An update was given on the Scottish Genomes Partnership and it was open to the floor to discuss the groups understanding of the work.  A report by Genetic Alliance UK – ‘Genome Sequencing: what do cancer patients think?’ was distributed.  You can download a copy of the report here.

An update on Access to Medicines was given.  Several topics were discussed including how the Scottish Medicines Consortium (SMC) is working and if the changes have been positive. It was felt that there is a real willingness from SMC to listen and to change. Genetic Alliance is producing a patient Charter on Access to New Medicines in Scotland and it should be available soon.

Specialist Nursing in Rare Diseases - this is another ongoing topic that most of the attendees were very interested in. As we are aware there is a Specialist Nursing Fund however the group would like to know how much of the allocated monies are still available.  There is a great deal of work to be done on this subject and there are still a great number of groups who do not have the services of a Specialist Nurse available to them.  

The Cross party Group was dissolved and the Chair (in his absence) was thanked for his service as he is not seeking re-election in the forthcoming elections. The Group expressed the hope that following the elections the Group will reconvene.

8th February Edinburgh 2016 - National Conversations initiative - Healthier Scotland - What matters to you?

The meeting was organised by Genetic Alliance Scotland. The discussion focussed on potential priority areas for NHS in Scotland over the next 10 - 15 years and the group were given the opportunity to offer their opinions on what is working well and what is needed to improve services for rare and genetic conditions.

The National Conversation was launched in August 2015 about what matters to patients when thinking about health and the future of health and social care services.  Some 150 discussion events have taken place from Shetland to South Ayrshire with over 17,500 people contributing through events or by email/ Facebook/Twitter.   

Over a couple of hours many topics were covered and the attendees appreciated the opportunity to contribute on what would be helpful for their members. Unfortunately, not a great deal of time was spent focussing on what is working well! 

Areas which were noted to take forward were:

  • More collaborative approach between medical professionals
  • GP awareness and how we can improve information giving regarding rare and genetic conditions.
  • Specialist Nursing - the need for and how we can best use the service
  • Quality of Life was a big issue - isolation/mental health/therapy through music/art/dance/exercise
  • Patients Rights Charter - are patients aware of their rights?
  • Educating health professionals - how do we get the NHS to contribute to the costs of providing information provided by Support Groups especially the smaller charities who can be struggling financially
  • More guidance/support required for insurance - life and travel and mortgage applications
  • Benefit applications and the cause for concern for many patients
  • How much does it cost to NOT diagnose a patient within a reasonable timeframe. Many patients experience treatment/drug therapy/hospital admissions which would not have been needed had a diagnosis been made earlier.

Posted March, April 2016