Accessability info and advice
- Created: Wednesday, 17 February 2021 22:11
- Published: Wednesday, 17 February 2021 22:11
- Written by by Gareth Jones, Third Force News,
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 News) newsletter Wed 13/01/2021
- Created: Tuesday, 16 February 2021 22:03
- Published: Wednesday, 17 February 2021 22:03
- Written by by Gareth Jones, Third Force News,
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
- Created: Tuesday, 16 February 2021 21:56
- Published: Wednesday, 17 February 2021 21:55
- Written by by Gareth Jones, Third Force News, RNIB
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
- Created: Tuesday, 16 February 2021 21:50
- Published: Wednesday, 17 February 2021 21:50
- Written by by Graham Martin, Third Force News,
16th February 2021
by Graham Martin
Could Scotland be set for European-style mobility hubs?
New transport plans could be trialled in Scotland to encourage a green recovery from the ravages of Covid.
A charity is working with the Scottish Government on proposals for European-style mobility hubs that bring various forms of transportation together in one place. Continue reading
- Created: Tuesday, 16 February 2021 21:39
- Published: Wednesday, 17 February 2021 21:39
- Written by Scottish Parliament’s Health and Sport Committee.
A radical revision of primary care is essential to ensure the next generation of citizens receive the care they need, according to the Scottish Parliament’s Health and Sport Committee.
In a report published today, the Committee say the traditional 9-5, 5 days a week service must become a thing of the past, replaced with a new model shaped around users’ needs. They urge the health service to fully embrace technology, enabling better data sharing and monitoring, to deliver a 21st century system fit for patients.
The Committee’s report is the culmination of a two-year inquiry into the future of primary care. The innovative inquiry was centred around members of the public with their views shaping the inquiry. The first phase of the inquiry, published in July 2019, revealed the public’s desire and support for a transformation in how services are accessed and delivered.
The inquiry has highlighted the growing costs and demands on the health service due to an ageing population and their more complex health needs, as well as an obesity epidemic and stark health inequalities in Scotland’s most deprived areas.
The Committee’s report questions the Government’s commitment to recruit at least 800 more GPs by 2030. They say the emphasis should instead be placed on committing to appropriate recruitment of professional staff across multi-disciplinary teams (MDTs), including both GPs and other professions, which can deliver the intended benefits to primary care as a whole.
Speaking as the report was published, Committee Convener Lewis Macdonald MSP said:
“It is clear that when it comes to primary care the status quo is no longer an option. Existing ways of delivering care are not only financially unsustainable but have failed to keep pace with modern life.
“We need to radically rethink primary care so that we can ensure our citizens receive the best possible care for generations to come.
“We must move away from the automatic provision of prescriptions and towards social prescribing. There must be widespread adoption of a preventative model of delivering care and the health service must fully embrace new technology.”
“A fundamental shift is also required in how the public and health professionals view General Practice. Instead of GPs being seen as the provider of all services, a new approach should be adopted where other health professionals, who are often better placed and equipped to help and support people can do so.”
“Our inquiry has been driven by hearing directly from the public about the primary care services they want, need and require and the Committee wants to thank all who took part in our public forums and shared their views.”
The Committee say a focus on prevention needs to be prioritised and mainstreamed, but for this to be a success it goes beyond just the health service. They identify the importance of local communities in delivering good health outcomes and say there is a clear desire amongst the public for connected communities, with spaces that give people opportunities to become active and socialise, and to connect to the local natural environment.
Widespread adoption of video consulting service ‘Near Me’ during the Covid-19 pandemic has been commended although the Committee has expressed reservations that default use could deepen health inequalities.
Recognising there have been multiple developments within Primary Care Services in recent times the Committee agreed it was appropriate they should look at the provision of services and approaches. The principal aims were to consider whether services were meeting current needs and how they should be provided in future.
The inquiry was split in two parts. Part 1 of the inquiry was focused on hearing from members of the public about how they felt services should be accessed and delivered.
Part 2 of the inquiry took those views to a wide range of health professionals involved in primary care, asking how they considered services could evolve in line with the needs and wishes of the users. The report can be found here.
The Part 1 report is available here: https://digitalpublications.parliament.scot/Committees/Report/HS/2019/7/3/What-should-primary-care-look-like-for-the-next-generation-#Introduction
You can learn more about the work of the Health and Sport Committee on the Scottish Parliament website.
Warren Hardie: 0131 348 5479
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For further information on this inquiry please contact David Cullum, Clerk to the Health and Sport Committee –
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The above information is from The Scottish Parliament News Update Tue 16/02/2021
- Created: Monday, 15 February 2021 21:33
- Published: Wednesday, 17 February 2021 21:33
- Written by Fife Centre for Equalities,
The above information is from Fife Centre for Equalities, Equalities Weekly Week Commencing 15-02-2021 Mon 15/02/2021
- Created: Friday, 22 January 2021 20:21
- Published: Friday, 22 January 2021 20:21
- Written by Fife Voluntary Action
Do you help individuals and families in need of emergency financial help? This comprehensive, up-to-date and easy-to-navigate guide containing 1700 grant-making charities giving £308.5 million in funds, will simplify the often difficult task of finding the most appropriate support for your clients by outlining the eligibility criteria, amounts available and how to apply.
You’ll benefit from extensive advice on how to select funds and make successful applications, as well as a directory of useful organisations.
The 16th edition of The Guide to Grants for Individuals in Need, containing over 200 new grant-makers, is the only publication to provide a comprehensive listing of all sources of non-statutory funding available for individuals in the UK.
The Scottish Community Development Centre has released new support materials have been produced to accompany the revised National Standards for Community Engagement. Developed in partnership with Glasgow Disability Alliance (GDA), the National Standards for Community Engagement are now in the following accessible formats:
• Easy Read version of the National Standards for Community Engagement
• Easy Read – plain large print (18pt) of the National Standards for Community Engagement
• Easy Read – plain large print (24pt) of the National Standards for Community Engagement
• Audio version (MP3) of the National Standards for Community Engagement
• A braille version of the National Standards for Community Engagement is also available on request.
View and download the accessible versions by clicking here. For more information or further support around accessible versions of the Standards, please contact Paul Nelis at SCDC on 0131 248 1924 or e-mail firstname.lastname@example.org.
From Fife Centre for Equalities e-bulletin June 2017
The below information is from http://www.healthcareimprovementscotland.org/our_work/standards_and_guidelines/stnds/neurological_care_standards.aspx
General standards for neurological care and support
It is estimated that as many as a million adults in Scotland are living with a wide range of complex and life-changing neurological conditions such as Parkinson’s disease, epilepsy, and Huntington’s disease, as well as those affected by cerebral palsy, brain injury, nerve and muscle disorders. Neurological disease can affect people in different ways; no two people living with a neurological condition are the same. People should expect to receive the same high quality service from the health and social care organisations that support them, regardless of their condition, geographical location or individual circumstances. Continue reading