A Letter From Charlie Faulkner

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A Letter From Charlie Faulkner


In April of this year I received a letter from Charlie Faulkner a year 6 pupil He wrote: 

I am writing to you pulmonary fibrosis trust because I recently lost my granddad to this disease so I would like to support him anyway as possible. I was only three when I lost him, I will raise lots of money. Luckily at this time in year 6 we have the opportunity to raise money for the charities we care about. I will also do this for my grandad. I understand you have been through a tough time through the pandemic with COVID-19 and you couldn’t do anything, but we knew you have been staying strong. Fingers crossed will be able to help patients at your charity and save lives . We also having a stall with different charities  including me and my friends. We asking really nicely if you could provide us with any merchandise to help raise as much money as possible for your charity

Yours sincerely Charlie Faulkner


This morning  I visited the school to present Certificates of Achievement to Charlie (left) and his friend Leo (right), who had helped him with his stall at the schools charity event. Between them they raised £69.37 for Action for Pulmonary Fibrosis. The children from the school’s  year 6, had supported 15 different charities and raised over £1,800, which is a remarkable achievement. 

I was deeply touch by Charlies Letter, particularly as he was aware of what impact, Pulmonary Fibrosis can have on individuals and the families. Not only this, he was aware of the effect, that the COVID-19 pandemic had had on people with PF and how they had to isolate to remain safe. I sent them Action for Pulmonary Fibrosis Pens, Wrist Bands, Badges, Booklets, Balloons and an A4PF Banner as requested.  

The picture was emailed to me, this afternoon by Mrs Fielding, who said ” Thank you for coming into see the children, it meant such a lot to them”. I also, know that their efforts will mean such a lot to people living with Pulmonary Fibrosis. It will have increased awareness of this devastating disease and how it affect peoples lives.

One thing, I am sure about, is that his Granddad would be very proud of Charlie and Leo, as is the school, and all of the members at Bolton Pulmonary Fibrosis Support Group

Well Done and Thank You !


Bolton Hospice Platinum Patron

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Platinum Patron Award Bolton Hospice

Bolton Pulmonary Fibrosis Support Group has become a Platinum Patron of Bolton Hospice 

Today we received our certificate to acknowledge that Bolton Pulmonary Fibrosis Support Group  has become a Platinum Member of the Bolton Hospice Patron Scheme  

Bolton Pulmonary Fibrosis was invited to hold their Pulmonary Rehabilitation Session at the Bolton Hospice by Dr Aurelia (Ellie) McCann Medical Director/Consultant Physician – with specialist interest. 

Pulmonary rehabilitation, also known as respiratory rehabilitation, is an important part of the management and health maintenance of people with chronic respiratory disease who remain symptomatic or continue to have decreased function despite standard medical treatment. It is a broad therapeutic concept. It is defined by the American Thoracic Society and the European Respiratory Society as an evidence-based, multidisciplinary, and comprehensive intervention for patients with chronic respiratory diseases who are symptomatic and often have decreased daily life activities. In general, pulmonary rehabilitation refers to a series of services that are administered to patients of respiratory disease and their families, typically to attempt to improve the quality of life for the patient. Pulmonary rehabilitation may be carried out in a variety of settings, depending on the patient’s needs, and may or may not include pharmacologic intervention.

The Wellbeing Hub at the Hospice has provides us with a COVID Safe environment where members, who are classed as “Clinically Severely Vulnerable”, have felt safe. Not only that, it is such a beautiful and wonderful environment to be. All of the staff are so warm and welcoming and provide a first class service to everyone who visits. 

We are so proud to be able to support our Local Hospice in this way, as they have given so much in many ways to the Pulmonary Rehab Group and Bolton Pulmonary Fibrosis Support Group.

We are also indebted to AgeUK Bolton for their support in providing our Pulmonary Rehab instructor Niall Bradley Who is the Health and Balance Manager. Niall is a fully qualified and certified Pulmonary Rehab instructor.

PharmaTimes Magazine Pulmonary Fibrosis

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PharmaTimes spoke with Bolton Pulmonary Fibrosis Support Group Secretary Carol Fielding explains, who explains her journey to diagnosis and describes what life is like with this lung condition


Can you describe your path to diagnosis?

I was diagnosed with rheumatoid arthritis (RA) in around 2012 but, at that time, even though I was a registered nurse, I was unaware  of any link with lung disease. It was perhaps just as well, as it took a while for me to get stabilised on disease-modifying anti-rheumatic drugs (DMARDs), then biologics, and I frequently had painful joints. The pain was like nothing I had encountered before. However, my joints did stabilise and, although I still get painful flare-ups, it is generally well controlled. In around 2016 I noticed a ‘funny cough’. It was not particularly troublesome, but it was persistent. I even thought it might be a habit I had developed. I mentioned it to my GP and rheumatologist but was told my chest was clear and there was nothing on my X-ray. However, I knew it was something. I’m a lifelong non-smoker and I couldn’t think of any environmental or occupational causes. As a former cardiology specialist nurse, I contacted one of my respiratory colleagues who kindly spoke to a respiratory consultant I’d known for many years, which was a luxury most people don’t have. That was it; the ball started rolling. A CT scan confirmed some fibrosis, so my methotrexate was stopped, and I was referred to the specialist centre at Wythenshawe Hospital, near Manchester. I was fortunate. I have heard of others in my situation who have just met barriers, been prescribed different antibiotics, and not been diagnosed for months, or even years. I was also referred to, and completed, a pulmonary rehabilitation programme in 2018.

PharmaTimes: What were you told about living with pulmonary fibrosis?

I truly don’t recall being told anything about living with pulmonary fibrosis (PF). It seemed to be assumed that I already knew, or that someone else had told me. I think someone should spend time talking about the diagnosis and its consequences. However, I have also heard some very negative experiences from those who have been told and have been extremely frightened. Okay, it’s not great, but it’s not all doom and gloom. I have a lot of life left in me yet!

PharmaTimes: How did you cope with the diagnosis?

It was all very vague really. I saw the PF consultant at Wythenshawe Hospital, but I still don’t recall PF being mentioned. I had gone to have some bloods taken and the consultant followed me to ask me to consider a pirfenidone trial. I was given written information to take home and consider. Of course, I googled pirfenidone to find out its effects and side effects and, though I wasn’t looking for it, I saw it was for PF. I also saw the prognosis and life expetancy I was shell-shocked and kept it to myself for a while, to make sense of it. I suppose it was a mixture of shock and disbelief and I kept thinking of my children and seven grandchildren. The youngest was only months old and I began calculating how old they’d be when I … you know, and that was the most upsetting. From my nursing background (I retired around 2016 after frequent absences caused by my RA and difficulty stabilising my treatment), I was very aware of the value of support groups. Therefore, I searched for my local group. That was my best move and where I have gained most of my information. As I learned more, my disbelief turned into anger. I was furious that treatment, not a cure, was limited to
idiopathic pulmonary fibrosis (IPF), and even that was restricted to when a patient’s lung function had deteriorated to 80% and was to be stopped when it reached 50%. People like me, with a known cause, such as RA, or asbestosis, or sarcoidosis, or farmer’s Lung, didn’t meet the criteria at all. I was livid and I think that was what focused me and helped me to cope. No way was I taking it lying down. I had fought to improve things for cardiology patients for much of my later working life so, being a bit bolshy, I was ready for a fight if necessary.to cope. No way was I taking it lying down. I had fought to improve things for cardiology patients for much of my later working life so, being a bit bolshy, I was ready for a fight if necessary.

PharmaTimesWhat care have you received? 

I was followed up regularly at Wythenshawe Hospital as part of the pirfenidone trial. I am convinced I was on the drug, not the placebo because I was so nauseous. I nearly threw it in more than once, but I persisted. I completed the trial in April 2020, just as the pandemic and lockdowns started to take hold. That was fortunate, as the trial was then discontinued. I was also on prednisolone, which I have tried to reduce, but even now I am taking 10mg daily. The pulmonary support group was also central to my ‘care’, as there was input from so many professionals, including the consultant from Wythenshawe Hospital, research doctors, pharmacists and dietitians. Clinic follow-ups were restricted to telephone reviews.

PharmaTimes: Is there anything you would change about your treatment?

The obvious thing I would change is for all patients with PF to be prescribed an antifibrotic from diagnosis. Like others in my position, I have reluctantly bought a supply of Nintedanib from India which is very uncomfortable for me, but I felt I had no other choice. My respiratory consultant and rheumatologist are aware, and my GP kindly monitors me. Hopefully, I will be prescribed the drug now that NICE [the National Institute for Health and Care Excellence has seen fit to change its rule. But there are so many issues to address beside drug therapy. Treatment and management of PF is poor for lots of complex reasons.

Although I consider my GP practice to be very good, there was very little awareness of PF and all its different causes.  Consequently, diagnosis and referral to specialists is often late or very late. Few people can do what I did and call on former colleagues. Primary care is unable to request CT scans, which are essential for a diagnosis; coding is poor, leading to a lack of accurate data and false perceptions of the scale of the problem. Plus, the level of research
is woeful. How does having pulmonary fibrosis affect your day-to-day life? I think I have adapted to live my life as normally as possible. I have continued to have my shopping delivered after lockdown and I pace myself. I am looking to get a cleaner. I don’t have the energy I used to have, and bending down is a problem. My husband, children and
grandchildren are central to my usual week, and I am determined to continue to take the three-year-old to and from nursery for as long as I can. While I can’t have adventurous days out, I do go swimming regularly, which doesn’t seem to limit me. The children often come with me, and I feel very normal in a pool, which is great, although I don’t really understand my lack of breathlessness. I am also very conscious of avoiding infection, which can be difficult with young

PharmaTimesWhat are the key symptoms you experience?   

 I do get breathless, mainly walking up inclines or after walking only short distances, of maybe 100 yards. I also have spinal stenosis, which causes sciatica and limits my walking. Unfortunately, where I live is anything but flat, so I am limited. I do cough, which I know is troublesome for many, but so far it’s not a big issue for me. Fatigue can be a major issue and sometimes I must just go to bed. Fatigue is also a feature of RA and can be overwhelming.

PharmaTimesWhat would you say is the greatest challenge living with a  lung disease?

Uncertainty about the future is hard. I have little confidence to make plans, though I try to. I think it’s important to have goals and things to look forward to.

PharmaTimesHow has COVID-19 impacted your treatment/care?

Fortunately, I had virtually completed the pirfenidone trial when the pandemic started. Regular telephone reviews are not a very satisfactory alternative to face-to-face consultation on a regular basis. My lung function tests have been more restricted, although I can’t say my treatment and care have been compromised, as far as I know.

What advice would you give to someone newly diagnosed with pulmonary fibrosis?

Join a support group and get in touch with Action for Pulmonary Fibrosis. There is also a wealth of information on social media, but I would advise people to avoid sites and posts which constantly report someone’s got their ‘angel wings’. I really can’t and don’t want to handle that. I’m doing all I can to remain positive, with exercise, medication and diet, as well as getting on with day-to-day activities and enjoying my family.

What are your hopes for the future? 

I am hoping for a reasonable quality of life for as long as possible I want to continue to enjoy my family and regular holidays. I hope there will be progress in the care and management for patients with PF, with, ultimately, prevention or a cure. In the meantime, work should be focused on prompt diagnosis and timely referral for specialist treatment, including antifibrotics and pulmonary rehabilitation, plus much better information and communication
at the right time. It is an exciting time for PF. I am working with Bolton Pulmonary Fibrosis Support Group, Action for Pulmonary fibrosis and the European Lung Foundation to progress the care and management of these lovely people who have been dealt a lousy hand. Locally, we are working with the Bolton respiratory consultant and the hospital to engage with primary care to educate and improve diagnosis and referral. My local MP, Mark Logan, has
taken a keen interest and his input is very much appreciated.

About Action for Pulmonary Fibrosis

Action for Pulmonary Fibrosis (APF) is a growing community of patients, families, researchers and healthcare professionals striving to find a cure for pulmonary fibrosis (PF) so that everyone affected by the disease has a better future. It supports patients and families and raises awareness of PF through campaigning, fundraising and
education. Additionally, it funds research to improve quality of life for people living with PF and to find a cure. www.actionpf.org

42 PharmaTimes Magazine • January/February 2022

Pulmonary Rehab Wellbeing Hub

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We are pleased to announce that our Pulmonary Rehab Sessions are now taking place at the Bolton Hospice Wellbeing Hub. We are delighted to be able to offer our weekly Pulmonary Rehab Sessions at this luxury, spacious and relaxing venue, as one of their specialist support services. The sessions are run by specialist Pulmonary Rehabilitation instructor Niall Bradley   

Wellbeing Hub 

Bolton Hospice has redeveloped their day therapy service to help respond to the growing demand for specialist palliative care in our community.

The Wellbeing Hub will be a beautiful, calming space and alongside the current day therapy model will offer a flexible,  drop-in service with access to new wellbeing and support sessions and specialist services so the hospice can help even more local people with life-limiting illnesses.

The Wellbeing Hub offers wellbeing and support sessions and specialist services such as symptom management advice sessions, legal advice & benefits clinics, outpatient clinics, bereavement support sessions, wellbeing sessions such as mindfulness and yoga Pulmonary Rehab and a new relaxing café area.

What is Pulmonary Rehabilitation 

Pulmonary Rehabilitation is an exercise and education programme designed for people with lung disease who experience symptoms of breathlessness.

PR focuses on tailored physical exercise and information that helps people to better understand and manage their condition/s and symptoms, including feeling short of breath. It’s included as a key intervention in the NHS Long Term Plan, which has made respiratory disease a new national clinical priority. Most people who go to PR have chronic obstructive pulmonary disease (COPD), but people with other long-term lung conditions, such as bronchiectasis and pulmonary fibrosis, can also benefit. A PR course typically lasts six to eight weeks, with two sessions of around two hours each week, and includes an individually prescribed exercise and education programme including aerobic exercise and resistance training and lifestyle support.

PR has been shown to support better self-management and reduction in exacerbations, reduction in numbers of acute and emergency admissions and reduction in primary care appointments.




This is the room where the Pulmonary Rehab Sessions take place. It is a spacious, bright and welcoming room, with air conditioning. Just off to the right are two sets of double patio door leading out on to large outdoor veranda overlooking the lush peaceful gardens 




The veranda is peaceful and quiet were you can sit in quiet contemplation following you exercise session, allowing you  to cool down and gently recuperate before leaving to continue you day. 

Facebook Find Us On Facebook

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Find Us On Facebook

Many of the 80 Pulmonary Fibrosis Support Groups throughout the UK have a Facebook page at a Social Networking Platform for their own individual members and also linked to other Support Groups

People who develop or are living with Pulmonary Fibrosis can very easily become detached from society and become a recluse in their own home. Pulmonary Fibrosis is a terminal disease with a life expectancy of between 2-5 years. a daunting prospect for anyone diagnosed with the disease.

Being able to connect with others who know and understand how Pulmonary Fibrosis can affect their lives along with family, friends and carers is of great importance. The support that social media platforms can bring is invaluable. 

If you live with pulmonary fibrosis or know someone who does why not join our Facebook Community to find out more and know that you are not alone. There is so much help support and information out there to help provide and give you a better quality of life.

It was decided to make it a closed group to give a more private and comfortable environment, preventing bombardment from unwanted advertisements and offers etc.

Anyone wishing to join Bolton Pulmonary Fibrosis Support Groups Facebook group can do so by contacting David at facebook@boltonpulmonaryfibrosis.org and he will send you all the relevant information required.

We look forward to seeing you on Face book very soon.

If you wish to become a member of Bolton Pulmonary Fibrosis Support Group Contact Steve Email steve@boltonpulmonaryfibrosis.org or Telephone 01204 397804 to find out more 

The support group meets every 2nd Thursday of the month at 2 pm – 4 pm. Due to the COVID-19 Lockdown, we are unable to hold face to face meetings at Bolton CVS Bold Street Bolton BL1 1LS That is why we are holding Virtual Online meeting to keep in touch with our members and continue to provide the support, latest news and information related to pulmonary fibrosis and introduce them to our many interesting and varied Guest Speakers   If you would like to join our monthly Virtual On-Line Meetings :

Sign Up For Our Monthly Online Virtual Meetings

National Lottery Community Fund Success

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National Lottery Community Fund

We applied for a National Lottery Community Fund Grant back in December 2019 The purpose of the funding is to be able to provide weekly
Pulmonary Rehabilitation Sessions for our Members, particularly those who have already completed a Full 8 week Pulmonary Rehabilitation Course at Bolton One. This is lead by Senior Respiratory Physiotherapist Clinical Lead Tom Allerton and Clinical Lead Respiratory Nurse Michaela Bowden, both from The Royal Bolton NHS Trust. Our aim is to encourage members to continue Pulmonary Rehab on a regular basis, following their 8 week course to keep up their maximum level of fitness and respiration. Thus giving them greater control over their general health and well being, maintaining a better quality of life. We are hope to have this up and running in May of this year.

Today we received the following information via email from the National Lottery Community Fund 

We’re going to fund your project idea
We’re so happy to tell you we really liked your application for National Lottery Awards for All. And we want to give Pulmonary Fibrosis Rehab £ 9956 to help your community thrive.

We’ll send the funding to your bank account
You should see the funding in your organisation’s account in the next couple of weeks. So you can start spending it on the activities you told us about in your application.

The terms and conditions
We talked about how funding from The National Lottery comes with terms and conditions, so you might want to look at them again. You can find them here tnlcommunityfund.org.uk/awardsforall.

Hang on to your receipts
We could ask to see receipts and invoices related to your funding for at least seven years. There’s more information on our site about how to keep us up to date, and what sort of information you should keep: Managing your grant

It’s important you tell people your funding came from The National Lottery
We’d like as many people as possible to see how we use the money raised by National Lottery players.
And telling everyone where your funding comes from will help you spread the word about your project, and the great work you’re doing in your community.

Sharing your story
We’ll publish the good news on our website and send the story to local media.

You can share the good news about your National Lottery funding with your community and local MP before we publish anything. Have a look here to find out more on how to share the good news.

If you use facebook or twitter, we’d love to hear more about your project through these channels:
facebook.com/TNLCommunityFund and twitter.com/TNLComFund
You can also download our logo and order free branded materials

If you’re going to take pictures of the people taking part in your project
Think about your data protection responsibilities. If you want to share images of people, make sure you get their consent first. You’d normally do this with a consent form. Once you have the photos make sure they’re stored safely.

We’d like to keep in touch – to see how you’re getting on
We’ll keep sending you email updates. They should help you with things like:

  • how to publicise your funding
  • information on other funding
  • ideas and tips on projects from other fund holders.

And last, but not least – well done
Congratulations on your project funding. And thank you for everything you do to support your community.

If you have any questions at all, please get in touch
You can call Cath Futers on 0191 376 1889
Or you can email catherine.futers@tnlcommunityfund.org.uk

Best wishes,
Julie Galano
Head of Funding

Being able to offer Pulmonary Rehab sessions to the members of Bolton Pulmonary Fibrosis Support Group is going to help give them a better quality of life.

Jean-Michel Fourier Secrétaire Général APEFPI

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jean I am delighted to announce that Jean – Michel Fourrier Secretary General Association de Patients Fibrose Pulmonaire Idiopathique France will be our honoured guest at our support meeting on Thursday 12th December 2019. J

Jean – Michel contacted me, via Twitter, last week to see if he could attend one of our support group meetings. He has been tasked to set up a network of support groups like ours throughout France in 2020. In his message he said “At APEFPI we have the project to launch regional support groups in 2020 … I would love to attend one of your meeting in the coming weeks and discuss with you how you are managing it from an operational point of view … tell me how it sounds to you .. Jean-Michel”.

Obviously we are delighted that he has chosen Bolton Pulmonary Fibrosis Support Group out of all the Pulmonary Fibrosis Groups throughout the world requesting our operational  point of view.

We have decided to bring the meeting forward and extend it by an hour, there for the meeting on Thursday 12th will commence at 1pm – 4pm. This will allow time for a finger buffet and for Jean -Michel to meet our members the official guests Professor Donna Hall CBE  Chaiman the Bolton Foundation Trust. Dr S. Raza, Lead ILD Consultant, Marie Forshaw Deputy Director of Nursing  Michaela Bowden Lead Respiratory Specialist Nurse, Tom Allerton Clinical Lead Respiratory Physio Therapist Tracey Holliday Specialist Respiratory Nurse the Royal Bolton Hospital, Lorna McLaughlin Regional Coordinator Action for Pulmonary Fibrosis, Daren Knight CEO Bolton CVS. Dr Michael Smith Chief Officer Bolton GP Federation.

Anyone wishing to join us on that day may do so by register by email to admin@boltonpulmonaryfibrosis.org  Cost £12.50 including Buffet Lunch.

We look forward to welcoming members from other support groups in the area who wish to join us.

Meetings held Bolton CVS Bold Street Bolton BL2 1JZ 1pm-3pm.


Nintedanib Licensed & Approved by NICE

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Nintedanib Licensed & Approved by NICENintedanib is the latest drug to have been licensed and approved by NICE for the treatment of Idiopathic Pulmonary Fibrosis (IPF).

Nintedanib works differently to pirfenidone and therefore has different side effects.

Who is eligible for nintedanib?

Nintedanib is licensed for the treatment of mild to moderate IPF, and NICE have laid down certain criteria for physicians to prescribe nintedanib within the NHS.

The lung function criteria for obtaining nintedanib is the same as that of pirfenidone with a Forced Vital Capacity (FVC) of between 50-80% predicted for age, height and weight. This means that your FVC must be between 50 – 80% predicted.


Like pirfenidone(Esbriet), nintedanib cannot cure or stop pulmonary fibrosis. However, both Nintedanib and Pirfenidone (Esbriet) have been shown in clinical trials to slow down the progression of IPF, meaning that the disease gets worse more slowly. The size of the benefit is broadly similar between the two drugs. At the current time it is not possible to say which drug is better, and it is important for patients to discuss the “pros and cons” of each drug with their healthcare provider.

Side effects

Nintedanib (Ofev) is reasonably well tolerated but does have side effects, primarily leading to diarrhea and nausea. It can also cause liver damage and patients taking Ofev will require monitoring of liver function tests. N Ofev may also alter the risk of bleeding, and therefore if patients are taking anticoagulants, such as warfarin, they will need closer monitoring than usual and dose adjustments maybe required. There is also a small potential increased risk of heart -related death.

Drug Interactions

Some drugs interact with (Ofev) in the body. These include some antibiotics such as Ketaconazole and Erythromycin and other drugs such as Rifampicin, carbamazepine, phenytoin, and St. John’s wort as well as cigarette exposure. If you are concerned about any drug you are taking, please contact your healthcare practitioner for advice.


Nintedanib (Ofev) is a new anti-fibrotic drug that slows down the progression of Idiopathic Pulmonary Fibrosis. It has similarities and differences in comparison with Pirfenidone (Esbriet) so patients should discuss the options with their healthcare provider.

Radio FM IPF Week Broadcast

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Bolton FM Radio IPF Week broadcast

Bolton FM Radio

I6th – 22nd September is  International IPF Awareness Week, as part of our effort to promote the awareness of IPF, we took to the Airwaves and went along to see our friends at Bolton FM Radio. It is approximately 12 months since we were last in the studio, with presenters David, Paula and Tony,  promoting the support group. As always we were greeted with a warm welcome and a cuppa, before we ventured into the studio to start the show, Community Corner.


Anita and David two members of our support Group Joined m the studio to inform listeners of what the signs and symptoms of Idiopathic Pulmonary Fibrosis (IPF), how it affects people, what treatments or lack of treatments are available. What the prognosis of this devastating terminal lung disease is. We then went on to give an update on what had taken place with the support group over the past 12 months, Commemorative Oak Tree Planting at the Royal Bolton Hospital. How we have established strong links with the Respiratory Team, Consultants, Doctors Nurses, Physiotherapists. The Hospital Trust Managers and Trustees. Our success on attaining a Greater Manchester Health and Wellbeing Project  Grant in November 2018 a grant of over £4,000 a year for two years. This has given us the security to continue supporting people with IPF, their families, friends and carers. We also secured support from the Dr Michael Smith Chief Officer from the Bolton GP Federation, who had agreed to circulate posters, leaflets diagnostic information to all of the GP’s within the Bolton area, for which we are most grateful.

David the Bolton FM presenter said that Bolton FM was the heart of the community, to which David from the Support Group replied, If Bolton FM is the Heart of the community then Bolton Pulmonary Fibrosis Support Group was the lungs of the community 


Listen to the broadcast by clicking on the arrow below 

All at Bolton Pulmonary Fibrosis extend our sincere thanks to David, Paula, Tony and all of the technical staff at Bolton FM for their time and support 




Congratulations to patientMpower

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patientMpower Announced as Recipients of Ireland’s Sláintecare Integration Fund

patientMpower, together with clinicians based at Beaumont Hospital, Dublin and the Mater Hospital, Dublin, have been announced as recipients of major new funding under Ireland’s Sláintecare Integration Fund. This fund seeks to support projects which can empower self-care and support the shift of care from the hospital to the community, particularly in chronic disease management. patientMpower have been awarded the funding to support the development of its “smart triage” application for kidney and lung disease patients. Using patient remote-monitoring, supported by specialist transplantation teams, it is hoped that this application will reduce the need for post-transplantation out-patient appointments by two-thirds, freeing up hospital resources, reducing waiting lists and improving patient’s quality of life.  

Eamonn Costello, CEO of patientMpower said “patientMpower develops solutions to empower better outcomes for patients, to enable them to manage their conditions at home, supported by their care team. Our solution for kidney and lung transplant is a major innovation, with the potential to really change how post-transplant healthcare services are delivered.  This work is in line with the aims of Ireland’s cross party Sláintecare programme, which seeks to use technology and connected health solutions to shift care from acute to community settings. We are delighted to be recipients of the Sláintecare Integration Fund which will support the implementation of our application in the Irish healthcare system”. The funding will now be used to run a pilot deployment on the use of patientMpower in kidney and lung transplant patients, being led by clinicians based at Beaumont & Mater Hospitals in Dublin. 

Kidney and lung transplant survival requires the continuous monitoring of patient-reported symptoms and laboratory data. Routine hospital attendance by transplant patients requires significant healthcare utilisation costs. Post-transplant, patients are reviewed on a regular basis. This traditional approach results in significant patient burden and inefficient use of healthcare resources. There is an unmet need for high quality, remote, community-based monitoring of kidney and lung transplant patients.

patientMpower Ltd. have developed a self-management mobile app for kidney and lung transplant recipients. The app can record both subjective data (patient-reported symptoms) and objective data from connected devices (blood pressure, lung function, weight, etc.). Patients can monitor trends in their data through the app, while the transplant centre can review the data in real time and act on important signals. The patientMpower platform is in routine use in the lung transplant programme at NYU Langone Hospital, New York, who have successfully reduced post-transplant outpatient visits by around 66%. In this innovative transplant centre, patients requiring urgent intervention can be identified earlier than the current standard of care, with capacity made available by deferring visits for stable patients. 

Face-to-face outpatient reviews can thus be triaged in a ‘smart’ manner, reducing the frequency of outpatient visits to the hospital. With the help of the Sláintecare Integration Fund, stable kidney and lung transplant patients will undergo remote monitoring from home. This will free up outpatient consultant resources to help reduce waiting lists for other Kidney & Lung disease patients.

Sláintecare Integration Fund launch event, with Minister for Health, Simon Harris

Sláintecare Integration Fund launch event, with Minister for Health, Simon Harris


About This Site

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Bolton Pulmonary Fibrosis Support Group was formed in February 2018 at the request of the Royal Bolton Hospital Interstitial Lung Disease Team and Action for Pulmonary Fibrosis the National Charity for people diagnosed with Idiopathic Pulmonary Fibrosis. Since 2013 over 60 support groups like ours have sprung up around the UK.

The aim of the group is to provide; support and information for people diagnosed with pulmonary fibrosis, along with their family, friends and carers in an environment where people can learn about their condition, .A place where they can share their thoughts, fears and feelings with other with the same condition..  A place of mutual understanding, care, support and learning,. to facilitate a better quality of life.


If you would like to make a donation Bolton Pulmonary Fibrosis Support Group Please do so HERE

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