MyTailoredTalks: new digital support for people living with Long Covid

An innovative pilot project to transform support for Long Covid patients in Scotland is underway to improve care for people living with the condition and dramatically relieve the pressure on GPs.

NHS Lothian has been working with Chest Heart & Stroke Scotland (CHSS) and Pogo Digital Healthcare to deliver a ground-breaking digital platform that brings primary care and third sector services seamlessly together for the first time.

The platform, called ‘MyTailoredTalks’, has been developed by Pogo Digital Healthcare and has been jointly funded by NHS Lothian, CHSS and the NHS Lothian Charity (formerly Edinburgh and Lothians Health Foundation) – with £120,000 invested in the platform so far.

It will allow GPs and other clinicians to refer patients automatically to the CHSS’s Long Covid support services and to provide tailored self-management information to patients.

Over 70 patients are taking part in the pilot across 26 GP practices in the region.

The team behind the project is appealing for partners to expand the ground-breaking innovation beyond Lothian so that everyone with Long Covid in Scotland can get better access to support.

Lothian-based GP Amy Small is living with Long Covid. She has been at the heart of developing the new system. She said: “As a GP and someone living with Long Covid this new digital system will be hugely beneficial to patients and primary care.

 “It’s a big breakthrough in integrated care. It gives patients direct access to support to help manage their condition.

 “GPs will also now be able to seamlessly refer their patients through to the charity’s Long Covid Support Service which provides one-to-one support and advice from experienced advisors who can provide more time to the patients than GPs can.”

Health Secretary Humza Yousaf welcomed the project. He said: “Chest Heart & Stroke Scotland’s Long Covid support service not only supports people living with Long Covid, but also helps reduce some of the pressure on NHS services. That is why we have funded and continue to support Chest Heart and Stroke Scotland to deliver a Long Covid Support Service.

“I welcome this collaboration and investment. This kind of digital innovation is just one example of the flexible way in which our NHS boards across Scotland are adapting to meet the needs of people with Long Covid. We are spending £3m this year to support NHS boards like NHS Lothian to develop and deliver the best models of care appropriate for their local population’s needs.

“I look forward to seeing the full results of the pilot exercise and we are committed to working closely with Chest Heart & Stroke Scotland to share the learning generated from it to support the sustainability of our health services.” 

Professor Tim Walsh, Director of Innovation for NHS Lothian, said: “This project shows what can be achieved by the NHS, patients, charities and digital expertise working closely together to find innovative solutions.

 “The personalised ‘MyTailoredTalks’ have been designed to provide trusted ‘bite sized’ information for patients to access whenever they need to and be able to share with family or friends.

 “We hope that these, together with the holistic support CHSS offer, will make a real difference to people living with Long Covid.”

Allan Cowie, interim chief executive at Chest Heart & Stroke Scotland, said: “For the past two years we’ve been campaigning alongside people living with Long Covid to ensure that systems are in place to help them easily access the care and support they desperately need.

“This system has the potential to transform access to wraparound care through GP services. It has been developed with clinicians and people with Long Covid and we want it to be adopted right across the country as soon as possible.

“It not only makes this process easier for people living with Long Covid, but it helps to alleviate some of the pressure that primary care is under by allowing clinicians to easily refer their patients into a service they can trust.”

Greig Brown, 44, contracted Covid-19 in January 2021 and has been hospitalised twice because of the condition. Once a keen runner and cyclist, Greig now lives with the symptoms of Long Covid, suffering from severe breathing difficulties and memory loss.

He has not been able to return to his job as a joiner at St John’s Hospital in Livingston, and he fears he will never regain the health and fitness he once had.

Greig lives in Armadale, West Lothian, with his partner, Sam. Their plans to marry are up in the air as they have had to use their savings while Greig has been off long-term sick.

He says: “This is my reality. I am so breathless and exhausted every day that simply getting downstairs and settled on the couch wipes me out.

“I used to walk miles every day around the hospital, carrying tools and anything else I needed. Now I can’t even walk to the kitchen without needing to sit down.

“My GPs kept telling me Long Covid is all new to them, too, and they don’t know how to treat it.

“I feel as if people like me have fallen through the cracks. I hope having a system in place like this NHS Lothian pilot that lets doctors refer patients directly to the CHSS support service can make a real difference to everyone living with Long Covid symptoms.”

Sanjay Singh, Head of Funding Programmes with NHS Lothian Charity, said the pilot is a “great example of partners working together during the pandemic to achieve patient care that is personalised and, crucially, in response to Long Covid, as we learn more about this awful illness as time goes on.”

 “We were delighted to be involved in this innovative project and to be able to support through funding made available to support our communities dealing with the effects of Long Covid,” he said.

Jack Francis, chief executive and founder of Pogo Digital Healthcare, added: “Working in partnership with healthcare professionals, patients and technology experts to develop this innovative new healthcare pathway has resulted in a unique way for patients to manage their Long Covid symptoms.

“I am delighted with the pilot engagement so far from both the patient groups and Chest Heart & Stroke Scotland’s advice line team, and it has been great to be part of such an innovative new healthcare solution.”

Mind to Mind launches to help people deal with life’s challenges

NHS Lothian has backed a new campaign designed to help people in the area look after their mental wellbeing.

The Mind to Mind, campaign features over 30 online videos of people talking about their own mental wellbeing challenges in a bid to help others who may be going through the same.

Covering topics including dealing with anxiety and panic, handling stress, improving sleep, lifting mood and moving through grief, each contributor shares practical advice on what has worked for them.

It also features commentary from a range of professionals and signposts where people can access further help and support.

The campaign also features a new advert across digital and radio to promote the help available.

Dr Belinda Hacking, Director of Psychology NHS Lothian and Consultant Clinical Psychologist said: “This new resource is a valuable addition to the wide range of mental health and wellbeing resources publicly available.

“Alongside our own Wellbeing Lothian website, we hope it goes a long way in helping people know they are not alone and know who to turn to for guidance and advice.

“Hearing about the experiences of others who have dealt with their own wellbeing challenges can really help, as can talking to others about how you’re feeling. Support is available to help you deal with life’s challenges.”

Minister for Mental Wellbeing and Social Care Kevin Stewart, said: “Mind to Mind has been created by people who have experienced mental wellbeing challenges for people who may be going through the same thing.

“If you’re finding things difficult, it’s important to remember support is available. Hearing about the experiences of others can help to navigate life’s daily stresses, and alongside practical advice, the website signposts where people can access further help.

“We’re hugely grateful to everyone who has contributed their advice on what has worked for them. Being so open about the challenges they’ve faced will hopefully help many others look after and improve their own mental wellbeing.”

Stephanie Phillips, Director of Service Delivery at NHS 24, said: “Mind to Mind and the video stories that have been so generously shared with us are a valuable addition to our online mental health resources at NHS Inform. 

“If you’re feeling anxious, stressed, or low, or having problems sleeping or dealing with grief this site can help you by hearing from others. You can also explore a range of guides, podcasts and organisations that can help.

“We are committed to offering a range of services to support people in the ways they find best for them when mental wellbeing challenges come along, as they do for everyone. Your GP, our phone lines and the emergency services are available for anyone that needs urgent help.”

Bob, a 68-year-old from Edinburgh has shared the mental health challenges he’s experienced on the Mind to Mind platform, and what he has found helpful, following a diagnosis of PTSD.

Encouraging people to reach out and speak to someone if they need help, Bob said: “To be honest, support group therapy was probably one of the best and most positive experiences for me.

“I found it tremendously helpful, to be able to talk to people who shared the same sort of experiences. It makes you listen and makes it easier for you to relate to things that you think only you go through.

 “I would urge anyone if they can find someone or a group of people, they can trust to speak to them. I learned that most people have at some stage gone through some sort of mental health issue, whether that be to a greater or lesser degree.

“This is why I emphasise the idea of trying to speak to someone because you just don’t know. Hearing from other people is what can help you, essentially. It’s what helped help me.’’

To access help and advice on looking after your mental wellbeing visit: 

wellbeinglothian.scot  and www.nhsinform.scot/mindtomind

Ten years of success for Scotland’s Family Nurse Partnerships

More than 10,000 young mothers and their children have been helped by a decade-long programme since it began as a pilot in NHS Lothian.

An analysis report on the Family Nurse Partnership shows positive results for mothers and babies in areas such as breastfeeding rates and stopping smoking, with most children meeting all their milestones, and 95% receiving all their immunisations.

The Family Nurse Partnership supports young, first-time mothers to prepare for motherhood and throughout the first two years of their child’s life.

Women’s Health Minister Maree Todd met mothers and staff who have taken part. She said: “Over 10,000 young women have now received support through this programme since it started, which is a fantastic milestone.

“Family nurses help mothers to think about the future, what kind of parent they want to be and their goals and aspirations for other areas of their lives like education and employment.

“Earlier this year we committed to expanding the programme to all young first time mothers aged 21 and under by the end of 2024. Where possible, we will also target first time mothers under the age of 25 who are care experienced or from the most deprived communities. This expansion will mean we can support up to an additional 500 families per year by 2025.”

Val Alexander, service manager of the Family Nurse Partnership, who has been with the programme since it began, said: “We are so proud of the Family Nurse Partnership and everything our clients have achieved. 

“The Family Nurse Partnership programme works to support young, first-time mothers to prepare for motherhood and continues that support for them and their child through the first two years.

“FNP was first delivered in NHS Lothian and to see it extended across Scotland to reach thousands more families is something very special for all of us.

“This 10-year analysis of the delivery of the service across Scotland will help us to see how far we have come and map out our goals and ambitions for the future of the programme and young families.”

Monkeypox: First case in Scotland

Monkeypox has been confirmed in an individual in Scotland. The individual is receiving care and treatment appropriate to their condition and contact tracing is underway.

Monkeypox is a viral infection usually found in West and Central Africa. The West African strain that has been recently detected in the UK is generally a mild self-limiting illness, spread by very close contact with someone already infected and with symptoms of monkeypox. Most people recover within a few weeks.

Public Health Scotland (PHS) is working with the UK Health Security Agency (UKHSA), Public Health Wales and Northern Ireland HSC Health Protection Agency to monitor and respond to potential and confirmed cases of monkeypox in the UK.

As of Friday 20 May, the UKHSA has identified 20 cases in England but more are expected.

Dr Nick Phin, Director of Public Health Science and Medical Director, PHS explains: “Public Health Scotland is aware of an individual in Scotland who is confirmed to have monkeypox. The affected individual is being managed and treated in line with nationally agreed protocols and guidance.

“We have well established and robust infection control procedures for dealing with such cases of infectious disease and these will be strictly followed.

“We are working with NHS Boards and wider partners in Scotland and the UK to investigate the source of this infection. Close contacts of the case are being identified and provided with health information and advice. This may include the offer of vaccination.

“The overall risk to the general public is low.

“Anyone with an unusual blister-like rash or small number of blister-like sores on any part of their body, including their genital area, should avoid close contact with others and seek medical advice if they have any concerns.”

Symptoms

Initial symptoms of monkey pox include fever or high temperature, headache, muscle aches, backache, swollen lymph nodes, chills and exhaustion.

A blister-like rash or small number of blister-like sores can develop, often beginning on the face, then spreading to other parts of the body, including the genital area.

The rash changes and goes through different stages, before finally forming a scab, which typically falls off over the course of a couple of weeks. Individuals are infectious from the point symptoms start until all the scabs fall off. During this time close contact with others must be avoided.

UKHSA identifies thirty-six more cases of monkeypox in England

The UK Health Security Agency (UKHSA) has detected 36 additional cases of monkeypox in England.

The latest cases bring the total number of monkeypox cases confirmed in England since 7 May to 56.

The virus does not usually spread easily between people, but it can be passed on through close person-to-person contact or contact with items used by a person who has monkeypox, such as clothes, bedding or utensils. Monkeypox is usually a self-limiting illness and most people recover within a few weeks.

While the current outbreak is significant and concerning, the risk to the UK population remains low.

Anyone with unusual rashes or lesions on any part of their body, especially their genitalia, should immediately contact NHS 111 or their local sexual health service.

A notable proportion of cases detected have been in gay and bisexual men, so UKHSA continues to urge this community to be alert to monkeypox symptoms.

People should notify clinics ahead of their visit and can be assured their call or discussion will be treated sensitively and confidentially.

Dr Susan Hopkins, Chief Medical Adviser, UKHSA, said: Alongside reports of further cases being identified in other countries globally, we continue to identify additional cases in the UK. Thank you to everyone who has come forward for testing already and supported our contact tracing efforts – you are helping us limit the spread of this infection in the UK.

“Because the virus spreads through close contact, we are urging everyone to be aware of any unusual rashes or lesions and to contact a sexual health service if they have any symptoms.

“A notable proportion of recent cases in the UK and Europe have been found in gay and bisexual men so we are particularly encouraging these men to be alert to the symptoms.”

UKHSA health protection teams are contacting people considered to be high-risk contacts of confirmed cases and are advising those who have been risk assessed and remain well to isolate at home for up to 21 days.

In addition, UKHSA has purchased supplies of a safe smallpox vaccine (called Imvanex) and this is being offered to identified close contacts of someone diagnosed with monkeypox to reduce the risk of symptomatic infection and severe illness.

We continue to engage with partners across the sector to ensure people are aware of the signs and symptoms and what action to take.

The vaccination of high-risk contacts of cases is underway. As of 10am on 23 May 2022, over 1,000 doses of Imvanex have been issued, or are in the process of being issued, to NHS Trusts. There remain over 3,500 doses of Imvanex in the UK.

NHS Lothian Summer Youth Taster Volunteering Programme

NHS Lothian is delighted to announce the launch of its Summer Youth Volunteering Programme.  The programme offers young people aged 16-24 the opportunity participate in a series of taster volunteering experiences over a five week period in one of our Acute or Community Hospitals. 

Young people participating will gain – 

·       The opportunity to gain insight into the NHS Lothian and careers in health care

·       The opportunity to build confidence and develop skills

·       A reflective workbook to identify new skills and experiences to support applications for work or study

·       Travel expenses

·       Volunteer uniform

·       Young Scot Points

·       A reference on completion of the summer programme

·       The opportunity to volunteer to extend volunteering beyond the summer programme commitment if desired

·       You can also use the volunteering hours towards a Duke of Edinburgh or Saltire award

We are currently accepting applications. The closing date for applications is the 3rd of June. 

If you have any queries about the Summer Youth Volunteering Programme or would like a member of the Voluntary Services Team to speak to a group of young people or to your colleagues, then please contact Head of Volunteering Jane Greenacre via jane.greenacre@nhslothian.scot.nhs.uk

Skin Cancer Awareness Month: NHS Lothian patients share experiences

Two patients have spoken out on Skin Cancer Awareness Month about the difference NHS Lothian’s treatment has made to their lives. 

Alan Vannan, 62 from Peebles, was diagnosed with squamous cell carcinoma (SCC), the second most common skin cancer, and has been administered with immunotherapy for two years.

Prior to this, patients like Alan with advanced SCC who’ve exhausted other treatment, such as surgery and radiotherapy, wouldn’t have had other options.

Alan said: “It started with a lump on my neck and cheek, so I went to the GP. 

“When I saw the doctor at St John’s, he took one look and diagnosed it as skin cancer and said they’d need to operate on it quickly. A Macmillian nurse, who’s been brilliant, called me on the way home.

“Processing what people are telling you after a cancer diagnosis can be the most difficult part. 

“Next was the surgery followed by radiotherapy, which wasn’t easy. Beforehand, I always thought of skin cancer as something minor and easily treated.”

Unfortunately, after his treatment, Alan received the news that the cancer hadn’t gone away.

Alan continued: “That was a difficult time. They couldn’t operate further. It came as a bit of a shock. Mentally, it was hard to process. They told me I had months left and that’s when I went to Dr Mackenzie. 

“I was given immunotherapy and it’s the best thing that’s happened to me. I’ve gone from being told I had months to it being two years later. 

“As soon as I started taking the drug the wound healed up. For me, it’s been absolutely fantastic. Every time I’ve got a scan I expected it to get worse, but it never has.

“I can’t praise the staff highly enough. The nurses, surgeons, radiologists and oncologists at the Western General and St John’s, and the Macmillian nurses, have all been amazing.”

Dr Joanna Mackenzie, Consultant Clinical Oncologist at Edinburgh Cancer Centre (above), said: “We’re always looking for ways to improve how we support our patients, and this has been a huge step forward in our management of difficult skin cancers. 

“To see it make such a difference to people like Alan who, just a few years ago, we wouldn’t have had the tools to help is really fulfilling for us as a team. 

“We’re also looking to conduct research to see if immunotherapy can be used at an earlier stage to help a wider number of patients with SCC.”

NHS Lothian last year also invested in a new superficial x-ray machine which treats basal cell carcinoma (BCC), the most common type of skin cancer. 

The machine is used for patients where surgery is not the preferred option, which can be due to other health conditions or the location of the cancer. 

BCC is rarely life-threatening but is typically seen on the face and attacks surrounding healthy tissue, sometimes leading to deformity. 

Lynda Gordon, 74, from Joppa, said: “About two years ago, I woke up with a hole at the end of my nose, so I contacted the GP.

“I was referred to the hospital at Lauriston and had an appointment to meet with a plastic surgeon, an oncologist and a dermatologist at the Joint Cutaneous Oncology Clinic. 

“It was diagnosed as a BCC and I chose to receive radiotherapy.

“An operation would have required taking skin from elsewhere and because I’ve had that before, with an SCC in 2017, I couldn’t go through that again.

“I went for the procedure at the cancer centre in February with this new machine. 

“I went every weekday for one week. Staff are lovely and make sure to explain everything. It only takes about two minutes each time. 

“The healing process was a bit unpleasant but three to four weeks later it settled, and my nose is looking absolutely fine. I’m really pleased with the results. 

“The care provided by staff is just brilliant.”

This Skin Cancer Awareness Month, NHS Lothian is also urging everyone to take simple precautions when enjoying the sun.

Dr Mackenzie continued: “It’s easy for us to think that, because we see many months of cold weather, the summer months can’t cause too much damage. 

“But whether at home or abroad, we all need to make the effort to protect our skin. 

“Simple ways to do so are avoiding the sun at peak times and wearing high-factor sunscreen as well as hats, sunglasses and clothing which covers sensitive areas more prone to sun damage.

“Please contact your GP if you’re concerned about any unusual changes to your skin.”

HPV: Get Protected!

NHS Lothian’s Community Vaccination Team has administered an incredible 5,200 HPV vaccinations in schools across Edinburgh and the Lothians this past month, even with a break over the Easter holidays.

Cervical cancer is the most common cancer in women under 35 and HPV is the main cause. A 2018 Scottish study showed that the vaccine has reduced pre-cancerous cervical disease in 20-year-old women by up to 71%.

The prevalence of certain HPV types in 16- to 18-year-old women in England, who were offered vaccination at 12 to 13, was found to have reduced from 15% before the vaccination programme to less than 2% in 2018.

The vaccination also provides vital protection against genital warts and anogenital cancers in both boys and girls. Consent forms were provided to schools earlier this year. Consent is provided for the vaccination course and, once given, covers your child for both doses.

The team began vaccinating at the beginning of April and this year’s programme runs until the end of June. If your child’s form was misplaced or lost, you can contact the school’s office to get another.

If your child has any questions or concerns, they are encouraged to speak to our vaccinators.

More info can also be found here 👉http://ow.ly/t3VW50Iy0bu

Dedicated Perinatal Mental Health Support Service for Edinburgh mums

Mums in the Neonatal unit in the Royal Infirmary of Edinburgh are to benefit from a dedicated Perinatal Mental Health Support Service which will match mothers with highly trained perinatal befrienders.

Aberlour Children’s Charity has secured funding which is enabling them to pilot an expansion of their successful Perinatal Mental Health Befriending Service with an experienced perinatal co-ordinator based at the hospital.  The support will be accessible to mums with premature and unwell babies in the unit from Monday 9th May. 

Three years ago, Aberlour recognised the need to support and improve the mental health of perinatal women and their children and set up a Perinatal Befriending Support Service for those who live within the East Lothian community.

The service helps mothers and mothers-to-be who are struggling with anxiety, isolation and depression in pregnancy, and after their baby is born up to the age of 12 months. It does this by matching mothers with highly-trained volunteer perinatal befrienders, who offer practical and emotional support to help tackle poor mental health and wellbeing.

Since it launched the service has supported 130 women, 134 babies and siblings and has recruited and delivered specialised perinatal befriending training to 67 befrienders in East Lothian. 

Having a new perinatal co-ordinator based at the hospital means that more mums from all over the Lothians and other health boards will be given additional emotional and practical support when they need it most. The co-ordinator will build positive relationships, provide an emotional listening ear and when necessary signpost to appropriate services within the mums’ own communities.  

Katy Ruggeri, Associate Director of Midwifery, Maternity, Gynaecology and Neonatal services at NHS Lothian, said: “We are thrilled that a Perinatal Mental Health Co-ordinator has been appointed and we welcome this innovative service from Aberlour.

“Mums who have babies in the Neonatal unit can be very fragile and having a dedicated Perinatal Co-ordinator who fully understands the challenges mums can face by providing additional support will be invaluable.”

Emma Cashmore-Gordon, Service Manager for Aberlour Perinatal Mental Health service said: “Having worked with women through their perinatal period for the past three years in East Lothian, we know what a difference our service makes to them as well as the lives of their families.

“We are so pleased that we can take this to the next level and provide support to mums throughout the whole of the Lothian region.

“This development is however a pilot, and we are seeking vital external funding to ensure continuity of our service to provide crucial support to families and secure employment for our staff. Any suggestions or assistance that can be given to help secure funding will be greatly appreciated.”

One mum who has received support from the service, said: “It’s a lifeline. Someone to listen to my crazy chat and have crazy normal chat with me!!!

“I’d be lost without my befriender. She is incredible, she juggles so much yet still has the time to speak with me and help me. She is amazing and she gets me through this difficult time.”

For more information about the service please contact Emma Cashmore Gordon, Service Manager, by calling 01875 632055 or email her at:  enquiries@aberlour.org.uk .