Local health and care services are asking for the public’s views on the future of care in Lothian.
The Lothian Health & Care System (LHCS), which is made up of NHS Lothian and the four local health and social care partnerships, is urging people to help shape healthcare in their region.
The pandemic has forced a major re-think across all services and systems, including healthcare. The NHS as a whole is facing sustained pressures and the LHCS wants people to have their say around the future of services over the next five years.
Together, the LHCS works to plan, commission, and deliver health and care services locally to a population of nearly one million which is projected to grow by 8% in the next decade.
Colin Briggs, Director of Strategic Planning, NHS Lothian, said: “We’re all aware that health and social care services are under significant and sustained pressure at the moment. That is why the LHCS is setting out its strategic direction for the next five years.
“Our Lothian Strategic Development Framework (LSDF) describes what we’re trying to achieve, now and in the future, the challenges we face and the direction we want to take over the next five years. It also lays out what we think the people of the Lothians can expect from us over that time, some of which will be hard for all of us”
“However, we can’t do this in isolation. Health and care belong to us all and we really want people to tell us their thoughts and ideas, their priorities, and their expectations, and also for us to be able to work together to find the best way forward.”
Through a combination of consultations, question and answer sessions and online feedback, NHS Lothian and partners are asking for the public’s feedback on the LSDF.
More than 400,000 postcards have been landing on doormats of households across Edinburgh, West Lothian, East Lothian and Midlothian giving details of how people can get involved and share their views. This builds on a successful initial engagement period during April, May, and June.
Mr Briggs added: “We’ve tried to be as accessible as possible in how we enable people from across our communities to give us their views.
“We want our patients, their families, our staff and the population we serve to be as involved as possible, both now and going forward.
“We are also being candid with our communities by saying that our performance and outcomes are not what we would want them to be. We need a new direction of travel in a post-pandemic world.
“The priorities currently outlined in the LSDF include moving care closer to home, supporting self-care, learning lessons from the pandemic, working closer with partners, improving our facilities, better utilising technology and reducing waiting lists.
“If you think we’re going in the right direction, or if you think we’re not, we’d really like to hear from you. Please get involved and tell us what you think the future of health and care should look like.”
An Edinburgh man who was inspired to become an organ donor is urging people of faith to consider giving others the ultimate gift.
Muhammad Munir, 55, is of the Muslim faith and, despite the difference of opinion on organ donation in the Islamic community, he feels very passionately about the topic.
Mr Munir said: “My religion teaches me that looking after yourself and other people is our number one priority, and my heart says that there is no religion on earth where you wouldn’t want to save someone’s life.”
Organ donation has been debated extensively in pre-modern and contemporary times and some still believe that organ donation is impermissible in the Muslim faith.
Mr Munir continued: “I am of the Islamic faith and there are still some Muslims who believe that you should not become an organ donor after death due to the lack of knowledge and awareness on permissibility of organ donation – we need to raise more awareness!
“In Islam, we pray five times a day. However, our faith states you should look after your health and your body first.”
Mr Munir added: “I’ve had many discussions within my community with people who disagree with my decision to become an organ donor. I try to provide them with logical, scientific information and signpost them to the updated information by the Muslim scholars, but I don’t push them too much as you can only debate with someone who’s open to changing their mind.”
Mr Munir is a Peer Educator volunteer with Kidney Research UK and has been volunteering with the Organ Donation project for the past 5 years. The project focuses on raising awareness and educating the South Asian (Sikh, Hindu and Muslim) ethnic minority communities on organ donation.
Mr Munir, who is partially sighted and works for the Royal National Institute of Blind People (RNIB), also felt that it was very important to make his family aware of his decision to become an organ donor.
NHS Lothian supports all initiatives to raise awareness of organ donation and Caroline Gallier, Specialist Nurse in Organ Donation, NHS Blood and Transplant, said: “Families play a key role in organ and tissue donation and if you die in circumstances where you could be an organ donor, a specialist nurse would check the NHS Organ Donor Register to see if you had signed up.
“They would also speak to your family to ask them about whether you had expressed any more recent views and whether your faith would place any restrictions on donation.
“So, whatever your decision, it’s important your family know what you want.”
If you want to donate after your death, the best way to ensure your family know what you want and honour your decision is to have a conversation with them about it and register as a donor.
You can also record on the register whether your faith/belief is important and should be considered as part of the donation discussion, and you can consult your faith leader for further information.
You can find out more about organ and tissue donation and register your decision online at www.organdonation.scot or by calling 0300 123 23 23.
If you would like to learn more about an Islamic perspective on Organ Donation, please visit the following website here.
Bringing new hope to patients with the help of specialised nurses
Scotland is leading the way with an innovative service for secondary breast cancer patients.
The Patient Trials Advocate service, (PTA) is the first of its kind in the UK, and it’s bringing fresh hope to those with the incurable cancer by introducing them to clinical trials which can help to improve outcomes and extend life.
The initiative has been developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – a form of the disease which kills 1000 women in the UK each month but remains largely unknown.
Also known as metastatic, advanced or stage IV breast cancer, it is a cancer that has spread beyond the breast to other parts of the body and can be treated but not cured. On average there are around 35,000 patients in the UK currently living with this form of the disease.
There is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the new, bespoke service, the first of its kind in the UK, sees specialist nurses support patients and link them up with clinical trials.
The PTA scheme covers Scotland in its entirety through nurses based in Edinburgh, the Borders and the Highlands. Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who can advise about clinical trials and answer any queries, search for suitable trials and support patients in discussing them with their clinician.
“We know that many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that through our PTA service,”says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital.
“We want to ensure that every patient with secondary breast cancer has the knowledge and the opportunity to discuss trials as part of their treatment pathway.
“I’m delighted that the Patient Trials Advocate service is now being expanded to include the whole of Scotland. I’ve been working with Make 2nds Count for over a year now and I think this service really is one of a kind. I enjoy the opportunity to talk to many secondary breast cancer patients, sharing my knowledge with regards to available trials and guiding them to explore their options.”
Since the service piloted last year more than 100 patients have been supported. Of those, 100% backed the initiative and 95% said they would talk to their clinician about the possibility of accessing clinical trials.
One of those who knows only too well the benefits of a clinical trial is Edinburgh mum-of-four Lesley Stephen. Diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.
Two years later she was told she had run out of treatment options. But she subsequently got the chance to take part in a clinical trial and is still living with the disease six years later.
Lesley says: “I had undergone 18 months of treatment, which was unsuccessful, when I heard of a friend who was taking part in a clinical trial. That inspired me and gave me hope that there just might be another option.
“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness. But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there perhaps, is another possibility out there for them.”
Make 2nds Count was founded by mum Lisa Fleming, 38, of Edinburgh, who had no previous breast cancer diagnosis, warning signs or lump when she was told she had secondary breast cancer.
Her aim is to support patients and families, educate and raise funds for research into the disease. So far the charity has raised more than £1million.
To find out more about the Patient Trials Advocate service visit:
LGBT+ people across Scotland are continuing to face health inequalities across every measure of wellbeing, according to a major new report by NHS Greater Glasgow and Clyde, NHS Lothian and Public Health Scotland.
The findings of the Health Needs Assessment, commissioned by the Boards, found that the COVID pandemic has exacerbated issues, with significant numbers experiencing loneliness and isolation, while almost a half of LGBT+ people in the survey said they had experienced discrimination in the previous year – with trans and non-binary communities experiencing higher levels of abuse.
The assessment also revealed significantly high levels of mental ill-health, with more than half of all respondents reporting issues such as depression, anxiety and stress, with the highest rates experienced by trans and non-binary individuals.
The comprehensive assessment was undertaken to better address gaps in knowledge about the health and wellbeing of LGBT+ patient groups, to better inform approaches to public health for LGBT+ people, across seven groups: lesbian and gay women, gay men, bisexual women, bisexual men, trans women, trans men (trans masculine) and non-binary people across the Greater Glasgow & Clyde and Lothian areas.
Nicky Coia, Health Improvement Manager at NHSGGC said: “This report should serve as a wake-up call for everyone involved in the health and wellbeing of LGBT+ communities.
“Too many continue to suffer from discrimination and abuse, are experiencing social isolation and loneliness and suffering the impacts of poor mental health. This, combined with the poor socio-economic situations many find themselves in, contributes to a substantial health inequalities on every measure of wellbeing.
“While there are positives to be taken in terms of how LGBT+ experience healthcare, particularly from the GPs, there is still work to be done to improve access to, and experience of, person-centred healthcare, that treats the individual, no matter their gender identity or sexual orientation.”
Dona Milne, Director of Public Health and Health Policy at NHS Lothian, said: “We interviewed more than 200 people and over 2,500 people took part in the online survey as part of this research. Their experience is in stark contrast to the progress that many of us may feel has been made in achieving equality in Scotland.
“I want to thank everyone who took part and express our shared desire to highlight this as a key public health issue and deliver real improvements in health and wellbeing for LGBT+ communities.”
Some of the key findings include:
· Nearly three in four (73%) survey respondents said they ever felt isolated from family and friends and nearly two in five (38%) had felt lonely all of the time or often in the previous two weeks. Trans and non-binary people showed the highest levels of isolation and loneliness.
· The survey showed that overall more than half (54%) of respondents said they had mental health problems e.g. depression/anxiety/stress, but this was higher for trans masculine (75%), non-binary people (72%) and bisexual women (61%). Only one in four (25%) survey respondents rated their general mental and emotional wellbeing positively – but this was lowest for non-binary (9%) and trans masculine (12%).
· Of those who answered the question in the survey, nearly one in three (31%) said that they had ever made an attempt to end their life. Although the prevalence of suicide attempts was high across all LGBT+ groups, it was highest among trans masculine and non-binary people, with nearly half of respondents in these groups saying they had made a suicide attempt.
· Overall, nearly half (44%) of LGBT+ people in the survey said they had been discriminated against in the last year, but this was highest for non-binary (65%), trans masculine (62%) and trans women (55%).
· The survey findings show that 37% of LGBT+ respondents had ever experienced an abusive relationship; identity groups with the highest proportion reporting abusive relationships were trans masculine (48%), non-binary (45%), bisexual women (43%) and trans women (38%).
· only 59% overall rated their general health positively. Gay men and gay/lesbian women were the most likely to rate their health positively, while trans masculine and non-binary people were the least likely. A third (33%) of LGBT+ people had a long-term condition or illness that substantially interferes with their day to day activities.
· Most (88%) survey respondent had financial worries at least some of the time. One in six (18%) had experienced food insecurity in the previous 12 months. One in eight (13%) had ever been homeless.
The report’s authors have made 41 recommendations, including an immediate request that all Scottish local authorities should provide or fund at least some, community-led groups or activities for LGBT+ people, with provision for cultural, sport and physical activity and social interest groups, as well as targeting specific identity groups.
Other recommendations call for improvements in LGBT+ education in schools, improved LGBT+ training and awareness for health and other staff, improvements in mental health and gender identity clinics and more visibility of LGBT+ inclusive services.
Professor Nicola Steedman, Deputy Chief Medical Officer at the Scottish Government, said: “The assessment lays bare the fact that too many LGBT+ people are subject to significant inequalities which impact every aspect of their lives. I’m grateful to everyone who took part in the research and NHS Greater Glasgow and Clyde and NHS Lothian for carrying out this important work.
“The Scottish Government is committed to reducing inequality – in all its forms – and we welcome the report. We will continue to work with, and across our partners, to improve the health and wellbeing of our LGBT+ communities.”
Mark Kelvin, Chief Executive of LGBT Health and Wellbeing, said: “This report highlights what many of our community members experience in their daily lives.
“Whilst many people believe that LGBTQ+ people have achieved equality, this report reminds us that there is still a lot of work to do. Scotland is celebrated as being a welcoming and inclusive country and whilst that is true, almost half of LGBTQ+ respondents experienced discrimination in the past year.
“The report also highlights the health inequalities that still exist for many of us and provides very useful and realistic recommendations that will help LGBTQ+ people to live well.
Speaking specifically on how COVID-19 has impacted the LGBTQ+ community, Mark pointed out the dependency on LGBT nightlife for socialisation. He added: “Whilst the closure of pubs and clubs can be seen by many as an inconvenience, for LGBTQ+ people queer-friendly spaces provide an important place of safety and belonging.
“This meant that during the months of closures, people were shut-off from contact with others like them. I’m hopeful that this report can restart conversations with local authorities and other interested parties to open LGBTQ+ Community Centres, where people of all ages can access a place of safety, information, support, and importantly connection.”
Mhairi Crawford, from LGBT Youth Scotland, said: “LGBT Youth Scotland notes the publication of the health needs assessment of LGBT research findings report. We know from our own recently published research that health care remains a significant issue for LGBTI young people in Scotland.
“In particular, we welcome the recommendations for healthcare providers and other public bodies to undergo training, which is a key part of our LGBT Charter, in which we also support organisations to undertake reviews of policies and practice to ensure that they are as welcoming as possible for the LGBTI community, whether they are staff, clients, pupils or wider stakeholders.
“We know that alcohol free spaces are highly valued by young people we work with in our youth spaces – so we welcome the recommendation for more LGBT spaces that don’t have alcohol.
“Finally, we also welcome the recommendation that schools should undertake the LGBT Charter as we know this can have a massive impact on daily lives of LGBTI young people.”
NHS Lothian has warned that increasing cases of COVID-19 are placing mounting pressure on hospital and community services.Health chiefs said community prevalence of the virus is causing serious capacity issues across the whole system.
An estimated one in 20 people currently have the virus in Scotland with two thirds of the cases identified in the 20-59 age group. This is having an impact on workforce, with one fifth of nursing staff not at work as a result of COVID-19 absence.
Dona Milne, Director of Public Health, NHS Lothian urged people not to forget all that has been learned about keeping the virus under control.
She said:“COVID-19 has not gone away and cases are continuing to rise across Lothian. Our hospital system is under extreme pressure and we need people across Lothian to do their bit to prevent the system becoming overwhelmed.
“We would urge people to take sensible precautions when they are indoors or in crowded spaces and remind them that regular hand hygiene is vital and face coverings should be considered, especially in crowded places.”
Tracey Gillies, Medical Director of NHS Lothian said:“The number of hospital inpatients who have tested positive has increased by 50% since a week ago. This presents many logistical issues as they need to be cared for within COVID-19 specific areas.
“On top of that, and in line with community transmission levels, there are increased numbers of staff testing positive with COVID-19, who must then self-isolate to protect patients.
“All of this means services are stretched right across the system, including community and social care services, resulting in high numbers of patients who are medically fit to leave hospital but who cannot be discharged because they need care in place to support them at home.”
Relatives of patients are also being urged to help where they can by providing transport home for patients who are medically fit to be discharged, rather than have their relative wait for hospital transport.
This speeds up the discharge process and in turn frees up more hospital beds sooner, allowing faster admission for patients from our Emergency Departments where admission queues can form when the hospitals are full.
Relatives are also being asked if they can consider offering support to their loved ones who have been clinically assessed as “medically fit for discharge” but might still need extra help around their home.
Dr Gillies added:“We know that it is better for people to be looked after in a homely setting once they are medically fit to leave hospital. Unfortunately, the pressure on community and social care services means many patients are waiting too long for social care support and as a result spending longer in hospital than they need to.
“When appropriate, we therefore ask families to consider if they can step in and help support their loved one once they are fit for discharge. Again, this helps with the flow of patients through our hospitals and ensures that beds are available for the most urgent of cases.”
Dr Gillies reminded people in Lothian to make sure they get the “Right Care in the Right Place” by considering going to their local pharmacy or GP or by calling 111 to get an appointment with an expert in the Minor Injuries Unit (MIU), rather than automatically going to the Emergency Department.
She said:“If you think you need to visit A&E, but it’s not life threatening, call NHS 24 on 111 first, day or night.
“NHS 24 will direct you to the right care in the right place. They will direct you to an expert in our Minor Injuries Unit, GP or pharmacy and help reduce the length of time spent waiting in busy hospital departments.
“It is important too to remember that there is self-care information on NHS Inform.
“If it is an emergency always call 999 or go to your local A&E.”
Latest updates on SARS-CoV-2 variants detected in the UK
The UK Health Security Agency (UKHSA) is reminding people to ensure their COVID-19 vaccinations are up to date and to continue following COVID-safe behaviours, as latest technical data indicates BA.4 and BA.5 have become dominant in the UK and are driving the recent increase in infections.
The UKHSA’s COVID-19 variant technical briefing 43, published today, includes epidemiological analysis that shows that Omicron BA.4 and BA.5 now make up more than half of new COVID-19 cases in England, accounting for approximately 22% and 39% of cases, respectively.
Omicron BA.4 and Omicron BA.5 were designated as variants of concern on 18 May on the basis of an apparent growth advantage over the previously-dominant Omicron BA.2 variant.
UKHSA’s latest analysis suggests that Omicron BA.5 is growing 35.1% faster than Omicron BA.2, while Omicron BA.4 is growing approximately 19.1% faster. This suggests that BA.5 is likely to become the dominant COVID-19 variant in the UK.
The increasing prevalence of Omicron BA.4 and BA.5 is likely to be a factor in the recent increase in cases seen in the UK and elsewhere, though there is currently no evidence that Omicron BA.4 and BA.5 cause more severe illness than previous variants.
So far, vaccination means that the rise in cases is not translating to a rise in severe illness and deaths. UKHSA scientists are urging anyone who has not had all the vaccines they are eligible for to make sure that they get them as soon as possible.
COVID-19 HAS NOT GONE AWAY, so it is also vitally important that people continue to follow the guidance. Stay at home if you have any respiratory symptoms or a fever and limit contact with others until you are feeling better, particularly if they are likely to be at greater risk if they contract COVID-19.
Professor Susan Hopkins, Chief Medical Advisor at UKHSA said: “It is clear that the increasing prevalence of Omicron BA.4 and BA.5 are significantly increasing the case numbers we have observed in recent weeks. We have seen a rise in hospital admissions in line with community infections but vaccinations are continuing to keep ICU admissions and deaths at low levels.
“As prevalence increases, it’s more important than ever that we all remain alert, take precautions, and ensure that we’re up to date with COVID-19 vaccinations, which remain our best form of defence against the virus. It’s not too late to catch up if you’ve missed boosters, or even first doses so please take your recommended vaccines.
“Our data also show that 17.5 per cent of people aged 75 years and over have not had a vaccine within the past six months, putting them more at risk of severe disease. We 2urge these people in particular to get up-to-date.
“If you have any symptoms of a respiratory infection, and a high temperature or feel unwell, try to stay at home or away from others – especially those who are elderly or vulnerable. Face coverings in crowded indoor spaces and hand washing will help to reduce transmission of infection and are especially important if you have any respiratory symptoms.”
UKHSA encourage everyone to continue to follow the most up-to date guidance.
As we learn to live safely with COVID-19, there are actions we can all take to help reduce the risk of catching COVID-19 and passing it on to others.
The risk of catching or passing on COVID-19 is greatest when someone who is infected is physically close to, or sharing an enclosed or poorly ventilated space with, other people.
There are simple things you can do in your daily life that will help reduce the spread of COVID-19 and other respiratory infections and protect those at highest risk.
Things you can choose to do are:
Get vaccinated
Let fresh air in if meeting others indoors
Practise good hygiene:
wash your hands
cover your coughs and sneezes
clean your surroundings frequently
Wear a face covering or a face mask, particularly if you are in crowded and enclosed spaces.
Scotland saw the largest increase in Covid cases in the UK last week, according to the Office for National Statistics (ONS).
It estimates about 250,700 people – one in 20 – had the virus in the week ending 17 June – an increase on the previous week when about 176,900, or one in 30 people, had Covid.
Meanwhile, NHS Lothian said a fifth of its nursing staff were off work as a result of the virus. With a 50% rise in hospital inpatients testing positive in the last week, NHS Lothian says its services are coming under increasing pressure.
LAWYERS WARN OF MORE VICTIMS IN NHS LOTHIAN AUDIOLOGY CASE
Lawyers supporting victims of the NHS Lothian hearing service scandal have warned that the number of children affected could be far greater than those identified in the independent report.
An audit of the health board’s audiology services found significant concerns in 155 of the 1007 patients treated between 2009 and 2018, which led to some children being identified with hearing loss years later than when first tested.
However, it has now emerged that THOUSANDS of children could be affected as lawyers highlight the 1,007 patients analysed in the audit was just a “sample” of those tested during the 9-year period.
Grace Smith, Associate at global law firm PGMBM, who are supporting parents affected by the scandal, said: “Whilst the audit highlighted those 155 children who were significantly affected by the failures at NHS Lothian, it is clear that the real number of families affected is much higher.
“The audit was performed on a sample of just over 1000 patients that were treated at NHS Lothian between 2009 and 2018. Within that 9-year period there were far more children through the doors of the Paediatric Audiology Service. The patient case load for this time frame was 22,900.
“The audit found concerns with 88% of the records within the sample. If that same percentage is applied to the full patient caseload across that time period, then the number of families affected by the report, delays and misdiagnosis could run into five figures. We know that there are children who were not included in the audit sample who have been affected by the failings highlighted in the audit report. ”
PGMBM are representing a parent whose child was not included in the audit sample – but experienced significant and serious delays in diagnosis.
Grace added:. “One of the families we are representing was seen by NHS Lothian’s Audiology Service several times from 2019 after their child failed a hearing test at birth.
“Despite repeatedly raising concerns about their child’s hearing, they were dismissed again and again and told that their child’s hearing was normal. However, at almost three years old, an external second opinion diagnosed their child with severe hearing loss. This significant delay in diagnoses happened at a key developmental stage for their child.
“There are clearly more people affected than were reviewed in the audit sample. We would appeal to anyone worried to get in touch with either NHS Lothian or ourselves and we can look at ways to support you.”
The British Academy of Audiology report found systemic failings which led to babies and children undiagnosed or experiencing significant delays in diagnosis and treatment.
It was found that there were a series of serious issues particularly within the under-five age group of the Paediatric Audiology service. The root causes of these failures were found to be a lack of scientific leadership, knowledge, reflection and enquiry in the presence of a lack of routine and robust quality assurance process.
The report found that staff were not following professional standards, training was almost exclusively in-house and insufficient, testing was not carried out correctly and there was no evidence of consistent management protocol or structure for children after results of tests. As such children who presented with similar test results and histories were being managed in different and contrasting ways. It also found that parents concerns were often dismissed.
NHS Lothian apologised following the report which was published last December.
Anyone who thinks they might be affected by the issues identified in the audit and would like more information can speak to PGMBM lawyers at:
Today: AAA screening. All men 65 or over are offered an ultrasound scan to check for Abdominal Aortic Aneurysms (AAA) and will receive an invitation the year they turn 65.
Men aged 65 are invited for a one-off simple ultrasound of the abdomen (tummy) to detect a AAA. Treating a AAA early greatly reduces the chance of it causing serious problems.
