CoronaVirus

The most recent information that we have about the unpaid carers vaccinations is as follows

  • We have now passed one million first dose vaccinations in Scotland.
  • Second appointments for those who received their first vaccination at the beginning of the campaign are also underway.
  • Around 75,000 more people have been vaccinated than originally anticipated in Scotland’s deployment plan which is due to higher take-up rates of vaccine than anticipated and that is very welcome. But this all has had an impact on our available vaccine supply and we must therefore ensure enough vaccine for second doses when they are due.
  • Scotland continues to follow the JCVI advice on prioritisation – to protect those most at risk.
  • Unpaid carers, who continue to be prioritised as part of group 6, will be called forward as soon as vaccine supplies allow, both through letters to those on relevant benefits, and through a national marketing campaign signposting them to the forthcoming self-referral portal.
  • More details on timescales for unpaid carers will follow shortly.

Fife Carers Centre is a company limited by guarantee with charitable status.

Company Number 282309.  Scottish Charity Number SC029466.

Fife Carers Centre is an independent voluntary organisation funded by Fife Council and NHS Fife.

The above information is from Fife Carers Centre Information Bulletin Mon 15/02/2021

17th February 2021
Guest post

Mandy Laurie of Burness Paull looks at where employment law stands as the covid vaccine is rolled out

Since Margaret Keenan became the first person to receive the Pfizer vaccine in the UK, the rest of the nation has watched on as the introduction of two vaccines and the approval of a third have meant that a return to normal routines may be a step closer.

However, where does that leave employers and employees in terms of a return to the workplace? Can an employer make vaccination compulsory for all employees? And can employers insist that employees return to the workplace? Continue reading

16th February 2021
by Gareth Jones

MS Society Scotland has called for politicians to commit to taking action that will help those battling the condition

A Scottish health charity is calling for the creation of a ‘right to rehab’ to ensure that everyone can access the support they when they need it.

The Multiple Sclerosis (MS) Society Scotland is asking prospective MSPs to campaign on increased support and better access to treatments and rehab services for people living with the condition in the second of their three mini-manifestos.

The charity has highlighted that many people living with the condition are unable to find timely access to the treatments, physio and support that could help them live well. MS Scotland has one of the highest rates of MS in the world with 15,000 people living with the condition across the country.

Candidates are urged to commit to three areas of focus in the run-up to the elections at Holyrood in May:

  • Creation of a ‘Right to Rehab’, giving everyone in Scotland equal access to the right support in the right place at the right time
  • Access to appropriate disease modifying treatments (DMTs) no matter where you live in Scotland
  • Access to MS nurses when you need them no matter where you live in Scotland

MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. The condition is relentless, painful and disabling.

The treatment landscape for people living in Scotland has evolved rapidly in the past few years with the first treatments for the primary and secondary progressive forms of the condition approved for us on the NHS in 2020.

There are now 15 disease modifying therapies (DMTs) available for MS with the most recent, ozanimod, given the green light just last week (Monday 8 February). Haematopoietic Stem Cell Transplantation (HSCT), a further DMT, was recommended for use at the end of 2019 but is not currently accessible in Scotland for those eligible.

These treatments can decrease the number and severity of relapses and there is agreement among the MS and clinical community that early treatment with a DMT can improve long-term outcomes.

However, MS Society research has shown that the number of people taking a DMT who could potentially benefit has remained constant in spite of this progress.

This has upped pressure on MS nurses and is only likely to increase further as the treatment landscape expands and more of the MS population become eligible for DMTs. As it stands the average MS nurse caseload in Scotland is 1 nurse to 384 people living with MS; higher than the MS Trust sustainable caseload ratio of 315.

Physio, occupational therapy and symptom management treatments can help manage people’s MS and support them to live more independently.

Many people living with the condition, however, are unable to access the support they need. 29% of people with MS had an unmet need for physiotherapy while a third (34%) had an unmet need to remain physically active.

The Covid-19 pandemic has severely affected people’s access to these vital but already under-resourced services.

The UK MS Register life in lockdown survey vividly demonstrated the impact that Covid has had on people living with MS in Scotland. 44% of respondents reported that their MS symptoms had deteriorated during lockdown and 85% reported that their walking ability or balance had got worse

MS Society Scotland is using its #LouderForMS campaign to keep issues that affect the over 15,000 people living with MS in the country at the forefront as polls near.

MS Society Scotland director, Morna Simpkins, said: “Finding effective treatments to stop MS and helping people to live well with the condition are at the heart of what we do.

“Over the past 20 years the number of therapies available for people with MS has greatly increased and we want to see a system that makes the most of those advances.

“We want the next government to raise the standard of MS services across Scotland, so that people with MS are able to access the right treatment, care and support, at the right time. No matter who they are, where they live or their circumstance.

“The importance of a ‘Right to Rehab’ has been thrown into sharp relief in the past 12 months as services have been restricted and people face new challenges in maintaining their mobility and health. Giving everyone in Scotland equal access to the right support in the right place at the right time should be a priority.

“New standards for neurological care and support from Healthcare Improvement Scotland are a welcome step in tackling variation in the support people receive and the government’s announcement of a funding programme to support collaborative work in achieving the priorities of the framework was very encouraging.

“We must go further to ensure meaningful improvements to MS services across Scotland are realised. So this election time we are asking politicians and parties to get #LouderForMS to ensure the voices of everyone affected by MS in Scotland are heard in parliament.”

Mary Douglas, 68, lives in the Bodrers and was diagnosed with relapsing MS in 1983. The retired NHS manager experiences daily fatigue, sight issues and bladder weakness.

Mary said: “Under normal circumstances I see my neurologist or MS Nurse at my local district hospital twice a year and I also access urology and physiotherapy services.

“Because of the Covid crisis services were very poor for people living with all sorts neurological conditions not just MS.

“I had a physio appointment scheduled all the way back in April and they phoned me up a few days before and said I couldn’t come so a lot of things have been delayed.

“My mobility decreased in the short term because I wasn’t been able to see a physiotherapist and although we had telephone consultations I can’t really see how that works properly as they must need to see how you’re moving. It must be very difficult to deliver a good service over the phone.

“I try to look after myself by eating well and exercising, which hopefully helps you to keep moving but if I can’t move so well I feel that I’m bound to decline.

“Services are returning very slowly and I’ve now seen a physio in person but it was a very long wait.

“It also took well over a year to be seen from when I was first referred to a urology specialist for problems with my bladder. I was offered an appointment towards the end of last year which I wasn’t able to attend. When I phoned to change the appointment I was told the nurse had retired and has not been replaced so no appointments were coming up for the foreseeable future.

“I was put back on the waiting list with no hint of when the service would start again as though it had just disappeared.

“Thankfully, I’ve now seen the urology nurse and had a phone consultation with the urologist but during the height of lockdown this meant it was difficult to go out as all public toilets were shut. I have to carefully plan where I go so I know I’ll have access.

“This has a huge impact on my life, as well as hundreds of others. This is a human right, and more needs to be done to ensure everyone has the access to support they need.

“On top of that we’ve been impacted by venue closures. Our local MS Society group provides support services like pilates and yoga which help with mobility and socialising but they’ve also had to stop which has a big effect. Community support is important too and it was just another facet which fell away in the past year.”

To read MS Society Scotland’s manifesto in full and find out more please visit: www.mssociety.org.uk/scotlandmanifesto

The above information is from Weekly Health & Social Care roundup on TFN (Third Force Newsnewsletter Wed 13/01/2021

16th February 2021
by Gareth Jones

Media Trust is offering free training and support for small mental health organisations

Organisations that offer vital mental health support are being offered free communications support and training.

Headlining Mental Health is an exciting new programme from Media Trust for small mental health organisations. Continue reading

16th February 2021
by Gareth Jones

The Royal National Institute of Blind People has said lockdown could be exacerbating a condition for those with sight loss

A charity has said lockdown could be causing those with sight loss to experience hallucinations.

The Royal National Institute of Blind People (RNIB) is warning that ongoing lockdown and coronavirus restrictions could be causing a spike in hallucinations due to sight loss.

Hallucinations due to sight loss are known as Charles Bonnet Syndrome (CBS), which is caused when the brain attempts to fill in gaps in visual information with invented images or patterns. The hallucinations vary from person to person and range from simple lights or patterns to complex images. They are often distressing.

The condition has now sparked interest from Britain’s longest running television soap, Coronation Street, with a storyline showing Weatherfield resident Johnny Connor, played by actor Richard Hawley, beginning to hallucinate cockroaches, cats and people. Although his symptoms are caused by sight loss, they are initially misidentified as a psychiatric issue.

Although there is little research into the condition, it is widely believed that at least third of all people with significant sight loss experience these symptoms, but it is often under-reported.

Over the last 12 months, the number of people calling RNIB’s Sight Loss Advice Service to report CBS has increased – with sharp peaks in calls corresponding with coronavirus restrictions. Last month, the number of calls about hallucinations increased by more than two-thirds (67%) compared to January 2020, and accounted for more calls than any other condition.

Thelma Good, aged 70, from Biggar in South Lanarkshire, has experienced Charles Bonnet Syndrome for years after losing a large proportion of her sight due to glaucoma and cataracts.

She said: “I studied psychology at university, and we learned about Charles Bonnet Syndrome in my course. Because of this, although it would be years until I was officially diagnosed with the syndrome, I was able to understand why I was having hallucinations, I knew that it was related to my sight.

“One of the scary aspects for me is that when I cross the road my brain fills in the gaps in my vision with a clear road, which means that I can’t see approaching cars or cyclists. That can be really challenging and frightening, so it takes me a long time to cross roads.”

Dr Louise Gow, specialist lead for eye health at RNIB, said: “The increase in calls and emails we have received about CBS since lockdown has been dramatic. And the visions that are being reported are much more vivid than usual, which has left many people feeling particularly distressed – describing their hallucinations as ‘out of control’.

“It’s as though the stress and anxiety of coronavirus, and the resulting restrictions, has had an impact on people’s symptoms. Although there is currently no research to confirm such a link, it would seem stress and lack of stimulation can increase symptoms.”

To help people with the condition, RNIB has launched a new Talk and Support service specifically for people experiencing CBS. The service has been created with CBS specialists Esme’s Umbrella.

Judith Potts, founder of Esme’s Umbrella, said: “We launched Esme’s Friends, a telephone chat service, which has now joined RNIB’s Talk and Support Groups. The calls provide peer-support and new contacts, all of whom understand what it is like to live in a world of vivid, silent, visual hallucinations. The calls can be joined by carers and family members who are too often forgotten, but who also need support. Through Esme’s Friends, people living with CBS find they are part of a community which is developing its own voice.”

Dr Gow added: “It is very worrying that awareness of CBS remains low, even among health and care professionals. We have heard of several instances where GPs have mistakenly referred patients to mental health services, rather than directing them to information about how to cope with CBS and ensuring that they see an eye health professional. If this happens, it is possible that the underlying vision issue causing the CBS is not treated and could worsen, resulting in further avoidable sight loss.

“While there is still a lot to learn about the condition, it’s more important than ever that health and care professionals are made aware of CBS. There is a range of support and advice available to help people living with the condition. But patients must first be diagnosed appropriately.”

Professor Mariya Moosajee, consultant ophthalmologist at Moorfields Eye Hospital, said: “We are working hard to better understand CBS and how it can be managed. This includes a study to learn how common CBS is in children across the UK. We are hoping to start a study into deciphering the overall time period affected by visual hallucinations, as this will help us to provide a more accurate prognosis for patients to guide them on how long to expect them to occur.

“We would welcome further research on CBS to increase our understanding and would also encourage clinicians to ask their patients about CBS symptoms regularly.”

Anyone with sight loss who is experiencing visions or hallucinations – or any sudden change in their sight – should seek immediate help from an eye health professional or contact RNIB’s Helpline on 0303 123 9999. For more information, visit the RNIB website.

The above information is from Third Force News (TFN) newsletter Tue 16/02/2021

6th January 2021
by Fiona Milne
Communications Officer at Penumbra

Face-to-face support has been stripped away, but mental health charity Penumbra is still looking after its community through the Covid pandemic Continue reading

Information courtesy of Disability Equality Scotland

You can see the  story here:-  http://yoursayondisability.scot/weekly-poll-results-covid-19-supermarket-stockpiling-week-beginning-23-march/

Here are the results of the Survey

There Just one question…

Are you concerned about shortages of products in supermarkets across Scotland caused by panic buying?

Results:

Yes – 92% (45 respondents) No – 8% (4 respondent)

Comments made as part of the survey

  • Vulnerable People Missing Out

“People are selfishly stripping the shelves bare and it’s disgusting. If people just stuck to the usual amount they bought we wouldn’t be having this discussion. I have to shop for my elderly mother who is 88 tomorrow and we can’t even get the basics. It means me having to go to several shops and expose myself to even more risk of catching the coronavirus and then passing it on to my mum. Anyone who has hoarded toilet roll or anything else should be deeply ashamed of themselves.”

“The way many people have behaved stockpiling foods and toilet rolls is shocking and upsetting as their actions meant that people who are vulnerable to this virus were left without.”

“I am concerned about the lack of produce available and the lack of help available for people that have to stay indoors to their health. What measures have been put in place to help people like us? Not everyone has someone that can go shop for them and the availability of delivery slots is ridiculous.”

“Disgraceful when it is those who are vulnerable that suffer.”

“When I can get someone to take me to the supermarket the shelves are empty. People are so selfish and there are no delivery slots. I’m scared to go out when my carer or family offer to help.”

  • Online Deliveries

“Even worse than stockpiling is being unable to get groceries delivered. The only delivery service in my area was provided by Tesco. But they have stopped doing home deliveries which are very worrying because I am over 70 and not supposed to go out.”

“It has become incredibly stressful. I am housebound normally anyway and rely on food deliveries, I have not been able to get a delivery slot for weeks and am struggling to eat and mostly living off of cereal. I worry this will affect my immune system and I am more likely to get ill. Carers don’t have time either to help with shopping. There is help for older people in my area with meals, but this doesn’t include younger people with disabilities.”

“I tried to register under Sainsbury’s scheme but they changed the rules about disabled customers. So now to get a booking slot you need to be classed as “extremely vulnerable” by the Government. I went to the link to see if I qualified, only to discover that this doesn’t even apply in Scotland. So, I’ve no idea now how Scottish customers register for priority delivery slots.”

“Government’s solution to getting food while self-isolating due to vulnerable health is to shop online – This is not an option in rural parts at all! So, what do those of us living rurally with minimal support actually do to stay fed and healthy? Seems like the only option ultimately is to starve.”

“Impossible to get the online order. Have struggled to purchase easy to cook/make food products. Have had to rely on family to travel from Glasgow to come and drive around food stores to ensure I had suitable food products for the week ahead.”

“The issue was around the lack of delivery slots which seems to be being resolved. I presume the ones doing the panic buying will get fed up sooner rather than later.”

  • Quicker Action from Supermarkets

“Supermarkets should have acted quicker to stop stockpiling. Better guidelines to staff and limiting offers to one per customer.”

“Things seem to be settling down a bit, but supermarkets etc should have limited what people were buying immediately and the serious shortages would not have happened to such an extent.”

“Restrictions should have been limiting individual purchases as soon as the problem was recognised – 2 weeks ago.”

“Supermarkets should have limits introduced weeks ago.”

“In my opinion, I believe the supermarkets are doing what they can to help vulnerable people and the NHS to shop but there are those in society that are selfish and only think of themselves. Perhaps it is now time for Government to get a bit tougher on those who are stockpiling, as it appears they’re not listening to what’s been said!”

Below is a link to a survey by Disability Equality Scotland that is to find out the impact of COVID-19 on disabled people. It is so valuable to get this information to pass onto Scottish Government to shape how Scotland responds to people’s needs, so we appreciate this input.

This survey is completely anonymous and all the information you provide will go back to the Scottish Government to help inform their response.

Complete the survey online by following this link:  http://dfscot.com/c19

that takes you to the Survey Monkey website. survey set up by Disability Equality SCOTLAND

Please complete by Friday 27th March 2020