Information and Resources

24th December, 2024

20th June, 2024

31st May, 2024

25th April, 2024

11th January, 2024

23rd November, 2023

Information for CF Community (Burkholderia cenocepacia)

I am contacting you as part of a communication to all of our patients with cystic fibrosis (CF) following information issued by the UK Health Security Agency (UKHSA), who are investigating a small number of cases of the bacterial infection Burkholderia cenocepacia in the UK. Preliminary investigations suggest these cases may be linked to carbomer containing lubricating eye gels used to soothe dry eyes, though this link has not yet been proven.

So far, only a small number of people have been affected across the UK and the risk to most members of the public is considered to be very low. Even if a product is contaminated, only a small proportion of people using it would go on to develop infection. We are writing to you because people with CF are more likely to become seriously unwell with this infection. 

As a precautionary measure, and until further information is available, we recommend that individuals with CF avoid using carbomer containing lubricating eye gels where possible. If you have CF and are currently using eye lubricating gel and are unsure if this is carbomer containing or have any questions concerning this, please speak to your CF clinical team. UKHSA and partners are working to confirm the source of the infections and will provide more information on their investigations as soon as possible.

13th November, 2023

Modulator Therapy Update

Many patients have been in touch around the latest NICE appraisal of modulators which have been circulating on social media and forums.  I have added the link below for those not aware:-

https://www.cysticfibrosis.org.uk/news/latest-update-on-the-nice-appraisal-of-orkambi-symkevi-and-kaftrio

We would like to reassure you, that for those already established on treatment this will not affect supply or ongoing treatment for you.  However, for those patients who have yet to be initiated then this is of course concerning to read.

There is now a 3 week consultation period where health care professionals and members of the public are able to comment – we as your team will do this and we would encourage you to do this also.  Link below:-

https://www.nice.org.uk/guidance/indevelopment/gid-ta11187/consultation/html-content-5

If anyone has any further questions you will find lots of information on CF Trust website on social media and FAQ which I have included below:-

https://www.cysticfibrosis.org.uk/the-work-we-do/campaigning-hard/life-saving-drugs/life-saving-drugs-faqs

In the meantime, to clarify, this will not affect patients who are already established on modulator therapy.

1st November, 2023

Cystic Fibrosis Trust – Patient Reported Experience Measures survey invitation

Survey is OPEN 1st November 2023 – 31st March 2024

To access the online version of this survey please click this link: www.surveymonkey.co.uk/r/onlineadults

The Cystic Fibrosis Trust, together with parents, young people and adults with CF and health care
professionals, have developed a survey to help you describe your experiences of care over the
last 12 months. We invite you to tell us what you think of your CF service by completing this survey. It should take
no longer than 20 minutes to complete and you cannot be identified by your answers.

If you would like more information on how your data will be handled, please go to this link:
www.cysticfibrosis.org.uk/PREMsdatahandling

Paper versions of the survey have been posted to all patients.

We thank you in advance for completing the survey. It will be open for five months. Please only complete
survey once. The results will provide information for your CF team to support and develop their work,
guided by your views and feedback.

9th March, 2023

Survey – Cystic Fibrosis Clinical Psychology Service

I would like to ask for your help with a brief survey of your views on the Cystic Fibrosis Clinical Psychology service. It has been a time of change and uncertainty, with the introduction of CFTR modulator therapy for many of you, as well as the changes that the Covid-19 pandemic brought to your lives. For many of you, these changes came at the same time.

I would like to ensure that the Clinical Psychology service is meeting your changing needs as best it can. To ensure this, I would be really grateful if you could take the time to complete this brief survey.

https://nhslothiansurveys.onlinesurveys.ac.uk/cystic-fibrosis-clinical-psychology-service

Friday 21st October, 2022

Scottish Adult Cystic Fibrosis Service De-designation FAQs

What exactly is changing?

The Adult Cystic Fibrosis Service is moving from a national model to a regional one. Patients should see no difference in how they receive their treatments.

What is de-designation?  

When a service is nationally designated it means that National Services Division (NSD) in NHS National Services Scotland commissions specialist services to provide support to patients living with a rare condition or who have highly specialist needs in Scotland. This currently includes the Adult Cystic Fibrosis Service. To meet national designation, services need to meet a set level of criteria, including patient numbers.   A review of the Adult Cystic Fibrosis (CF) Service took place in 2019. One of the review findings highlighted that the Adult CF Service no longer met the criteria for national designation. Due to better treatments, patient survival has improved and at the same time, the number of patients has increased. This means the Adult CF Service is more suited to being delivered at a regional level, to bring services closer to the communities where people live.   The National Specialist Services Committee (NSSC), which advocate for the population of Scotland and are a key part of the governance of specialist services, recommended that national designation should continue for three years while work was undertaken to de-designate and devolve funding to the regions.   The start of the de-designation process was delayed due to the COVID-19 pandemic, but work is now underway. NSD are working with regional Planning Directors and regional services to ensure effective transition from national to regional delivery.  

Does this mean I will have to move centres?

No. Each service will continue to focus on the patient and the quality of care in the context of a patient-centered and accessible service for Scottish adults with cystic fibrosis. The de-designation process is work in the background, invisible to the patient.   The transition will be as seamless as possible, helped by the fact that the Service is already run out of three regional bases in NHS Greater Glasgow and Clyde, NHS Lothian, and NHS Grampian.  

Will I see the same team? Will there be any other changes to my care as a result?

Patients should expect to receive care from the same team, with no impact or changes to them – this has been set as one of the success measures for the de-designation process.

I receive most of my treatment at home – how will this change impact me?

There should be no change or impact on care settings, including in a patients’ own home. The service delivery will continue to ensure equity of access to services designed to be inclusive, person-centered, safe, and compliant with quality standards.

How do I share my views?

NHSScotland is committed to ensuring that patients and their families are at the centre of shaping healthcare services.

Nearer the handover deadline patients will have the opportunity to voice their views and perspectives at a regional level, for example through focus groups. The CF service will also listen to patient views, give advice and address any concerns patients may have.

National charity Cystic Fibrosis Trust offers practical support and information for people living with CF and their families. Their helpline is available for anyone who has questions about CF.  Likewise, Butterfly Trust offers resources and support services for people affected by cystic fibrosis in Scotland.

You can also submit comments or questions to National Services Division by emailing nss.specialistservices@nhs.scot

Is this change being made to save money?

No. The service no longer meets the criteria for national designation due to the increasing numbers of CF patients. The standards and the quality of care will be maintained when the regional model is established.

Do I need to do anything?

There is no need for you to take any action.  Services are expected to continue in the same manner with no changes to the patient experience.

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Thursday 18th March, 2021

Dear patients,

We have been notified that you have had varying responses in relation to carers/shielding family members receiving the covid vaccine.

Please find link below which you can register on if you fall into this registered carer category.

https://register.vacs.nhs.scot/

Following the announcement this week you will be aware that shielding has been extended until 26 April 2021 and Scottish Chief Medical Officer will be writing to you this week to give you more specific information in relation to this.  I know this is extremely frustrating for those of you who are desperate to get back into your workplaces. Unfortunately most employers/HR/Insurance will not support your return back into the workplace until the shielding recommendations have been lifted despite how keen you might be.

All the team are still here to support you with any health related issues/concerns/questions you may have, please get in touch via the CF office 0131 537 1762 or the mobiles 07770326301/07770326302.

Monday 8th March, 2021
 

UK Cystic Fibrosis Medical Association (UKCFMA) update on COVID-19 Guidance

People with CF, if over the age of 16 years, should have either been offered or have received their first vaccination. 

We now have over 289 people with CF in the UK have been infected with COVID-19. Broadly outcomes have been similar to those seen in the general population. Age is the most important determinant of outcome after COVID-19 infection. Adults with CF should take all practicable measures to avoid infection. The combination of age, more advanced CF lung disease and other CF-related problems, increase the risk of more severe illness and the need for treatment in hospital.

With the planned opening announced across the UK nations, shielding (regardless of whether you have received a vaccination) has been extended in England and Wales to 31st March and continues in Scotland for the foreseeable future for those on the Shielded Patient List. Northern Ireland didn’t formally reintroduce shielding during this lockdown. If you are on the shielding list, you will have been contacted by your CF team or received a letter from your GP. If you are unsure about whether you are on the list, or feel you should be, please get in touch with your CF team.

Following the phased opening of schools in Scotland, Wales, and Northern Ireland, the UKCFMA confirms that all children with CF should attend school unless advised against by their clinicians. The benefits of education outweigh the risks of COVID-19 for most children with CF. There may be a very small number of children with severe disease and multiple comorbidities who are advised by their clinicians to continue to shield. If you are unsure what you and your child should do, please contact your CF Centre.

As earlier in the year, the advice is to work from home if possible or not go to work. Everyone not on the shielding list, including those with CF, should continue to follow current government guidelines. Employers cannot compel those with shielding notifications to go into work, but adults with CF who choose to do so should ensure that their workplace has adequate infection control processes in place.

Regardless of this, it is important that people with CF continue to follow their respective government’s advice and take measures to avoid infection. Strict social distancing, wearing a face covering and cleaning hands continue to be very important. If you have concerns about your own circumstances, you should discuss these with your CF Centre.

Thursday 21st January, 2021
 

COVID-19 VACCINE

I know that some of you have received texts or letters from Scottish Government advising you that you will be contacted in relation to the COVID-19 Vaccine – great news! Please let us know when you have received your vaccine so we can update your records here. Your COVID-19 vaccine is free and no payment is necessary. If you do receive a text around NHS asking for bank details to pay online for your vaccine, please report this message as it is a scam.  

CF Patient Reported Experience Measures Survey

As part of our efforts to understand how our patients feel about changes in CF care we have implemented since the start of the pandemic, we are participating in the Cystic Fibrosis Trust’s Adult Patient Reported Experience (PREMs) survey. Open until 31st March 2021, it gives you the chance to tell us how you feel about areas of your care such as video consultations, access to airway clearance equipment and inpatient care, amongst others.

To access the survey please click directly on the links below:

English

www.surveymonkey.co.uk/r/E-adult

Welsh

www.surveymonkey.co.uk/r/welsh

 Polish

www.surveymonkey.co.uk/r/polskie

 If you would like a paper version of the survey, or someone to go through it in English, then please call or email the Quality Improvement team at QI@cysticfibrosis.org.uk or 020 3795 2162.

We will receive a centre report showing our results compared to UK averages and any respondents who have chosen to provide their e-mail address to the Trust will also be sent a copy of the centre report by e-mail.

Please consider taking part in this important initiative to help us identify the aspects of your CF care you value most and potential areas for improvement.

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Alternatively, or in addition to, there is the option of submitting something by sharing your experience of Health and Care Services, good or bad.  I know many of you receive care with other specialities, other Hospitals, other services alongside your CF care, so if you feel you wish to share, good or bad experiences,  then this would be your opportunity to do so.

www.careopinion.org.uk

Stay safe and well and remember to let us know when you have received your Vaccine for updating your records.
 

Tuesday 12th January, 2021
 

Dear patients,

 You will be a few weeks back into shielding given the changes to restrictions.

The guidance is on the link below, there are some changes to the guidance this time versus the guidance in March 2020 so please make sure you are aware of the information below.

https://www.mygov.scot/support-shielding/

We would strongly advise that for those of you who are going out then please wear your facemask.  Cystic Fibrosis is not an exemption and whilst we appreciate for some of you this is uncomfortable, we strongly encourage that you are wearing them not only for your own protection but to protect others around you.

Covid Vaccine

We still have no further information to share with you regarding roll out of the vaccine, we suspect you will receive a Scottish Government letter inviting you to book an appointment for your vaccine when it is rolled out.  

The CF Trust issued an updated statement of which the link is below. 

Updated CFMA COVID-19 statement

CFMA_Statement_Jan2021.pdf

We have had some patients inform us that their GPs have phoned them to reassure them that they will be invited for vaccine when it is their turn.  The advice is please do not phone your GP to ask when this will be and wait until you are invited by letter (or by telephone).  As your team, we are strongly encouraging you that you should receive the Covid vaccine when it is offered to you.  For those of you on Facebook, please see link below containing information about the vaccine from Dr Tom Fardon, CF Consultant at Ninewells Hospital in Dundee. 

https://m.facebook.com/story.php?story_fbid=10159244070173408&id=648458407

Thursday 5th November, 2020

Shielding Health & Wellbeing protection levels

Please find shielding letter attached with latest guidance.

Shielding – Health and Wellbeing – Protection Levels – Letter – FINAL 231020.pdf

TUESDAY 4TH AUGUST, 2020 

UPDATE ON CF OUTPATIENT AND OTHER HOSPITAL SERVICES FOLLOWING THE SHIELDING PAUSE

Following the pause of shielding from the 1st August 2020, we wanted to ensure that you have access to the current guidance and give an update on the CF service.

We understand that the shielding period has been very difficult for you and your families and that you may be anxious about the changes moving forward. We want to provide you with links to the most up to date Scottish Government advice, which we advise you follow.

https://www.gov.scot/publications/covid-shielding/pages/changes-to-shielding-advice/

With regards to returning to work following shielding please follow the guidance provided in the link below. We would encourage you to liaise with your employer and your occupational health department in preparation for return to work, to ensure that appropriate measures are in place.

https://www.gov.scot/publications/covid-shielding/pages/returning-to-work/

From the middle of August we will be re-commencing face to face clinic appointment but in limited numbers, therefore we will be continuing with “near me” virtual appointments also. You will either receive a letter with an appointment for a face to face clinic or a text link for virtual clinic.

As we have very limited appointment availability for face to face appointments, we ask you make every effort to attend. It is essential that you let us know if you cannot attend so we can offer the appointment to someone else/rearrange another appointment. If you are feeling unwell in the days leading up to, or on the day of your appointment you MUST contact us in advance of attending hospital.

Below is a link which details important information about attending hospital for your appointment.

COVID-19 Important Information on Attending Your Appointment V1.1.pdf

We are able to recommence home visits and ward attendances for routine care, for example port flushes and OGTT’s. However, it is essential that you contact us in advance of these appointments if you are feeling unwell and require review/treatment as we may need to see you in another area of the hospital.

If we can answer any other questions for you, please do not hesitate to get in touch with the CF team via the CF office 0131 537 1762 or the mobiles 07770326301/07770326302.

Monday 3rd August, 2020 

Scottish CF Group Post Shielding Advice

As shielding is relaxed by the Scottish Government (SG), we want to ensure people with CF in Scotland feel safe and able to return to a more normal life. We would advise all people with CF in Scotland to follow SG advice and also want to underline the importance of staying safe during this time.

Specifically:

1. When indoors in crowded areas such as supermarkets we endorse the wearing of facemasks for people with CF (either surgical disposable type or washable masks) rather than the use of face coverings such as scarves. Facemasks are safe and may protect you and other members of the public from infections. You may also wish to wear masks out of doors if you are not able to adequately social distance 2 metres apart from others*.

2. Good hand hygiene is really important, continue to wash hands as per SG advice.

3. If you get new symptoms of COVID we would ask you to contact your local CF team who will either arrange to see you or advise testing at a local community test centre depending on how you are at that time.

4. If you are having increased CF symptoms contact your CF team as you would normally to arrange review.

Your CF team is here to help and support you and will try to answer any specific questions that you might have.

* The wearing of facemasks in schools is discretionary as per SG advice for all children

Thursday 30th July, 2020

CLINICAL TRIALS ARE CURRENTLY PAUSED. PLEASE WATCH THIS SPACE FOR FUTURE OPPORTUINITIES

Cystic Fibrosis Research – Exploring your clinical trial opportunities (2020)

Survey for people with cystic fibrosis (CF) or parents of children with CF to explore your clinical trials opportunities.

What is the survey for?

This survey is repeated each year to gather your thoughts about clinical trials and to monitor the increase in awareness and understanding of what is available to you, along with simplifying the supporting processes of trial participation. The survey should take no more than 5 minutes and you can return to the questions if you cannot complete it in one session. Responses will be anonymous so they can be shared with your CF centre to help identify any areas for improvement. Thank you for the time you take to complete the survey – your answers will be valuable in our work.

This survey is now closed for 2020.

Wednesday 1st July, 2020

CFMA STATEMENT ON SHIELDING ENDING

Last week we disseminated our position on shielding ending which is available on the CF Trust website. The statement has been slightly amended to direct patients in the devolved nations to the UK website for further information and encourage post-transplant patients to speak to their transplant centres for advice. 

An updated version can be found on the Trust website here: https://www.cysticfibrosis.org.uk/news/uk-cf-medical-associations-statement-on-coronavirus

Friday 5th June, 2020

UPDATE ON SHIELDING STATUS

We understand that the 12 weeks for shielding was due to finish soon. We understand how difficult the last few weeks have been for you, and we do not underestimate how hard this has been for you and your families. However, we do not have enough information yet, to be confident that release from shielding is the right thing to do.

The CF trust and the CF Medical association have concerns about release from shielding too early, and we would agree with their statements. Please continue to shield as advised from the CF medical association as detailed below.

We will upload new information relating to shielding and the ease of lockdown once this is available.

CFMA position on shielding

The CFMA and CF Trust have supported the government advice on shielding for people with CF with the caveat that we are encouraging our patients to exercise outdoors beyond their homes if they are unable to exercise in the home environment. The low number of cases reported to the CF registry indicates that this has been an effective policy in avoiding coronavirus exposure. The UK epidemiological pilot data shows that the recent culture positive incidence in our community is as high in children as adults. Until we have evidence of immunity from past infection or achieve a much lower background disease prevalence, we continue to advocate shielding for those with co-morbidities such as CF. We appreciate the challenges that this poses to people with CF and their families and the socio-economic and psychological impact but continue to support the ongoing shielding advice which is in place until the end of June.

At the current time there is limited information which would support a change to shielding advice beyond June. We feel it would therefore be prudent to continue to review the situation over the next few weeks and consider the impact that the lifting of some of the restrictions which have been in place during lockdown demonstrate in the wider community to inform further recommendation, which will include the effect opening schools might have.

Universal antibody testing will be useful in informing us of the extent to which infection has occurred without complications in the CF community and will help to inform further advice on the need for shielding. We would strongly recommend roll out of antibody testing to this vulnerable group of patients.

Our position is to support people with CF to be able to return to school and work at the earliest opportunity but until we can be assured that it is safe to do so shielding offers an important mechanism to keep people with CF safe.

Please continue to visit the CF Trust website for further information-https://www.cysticfibrosis.org.uk/news/cf7-easy-recipe-ideas-letter-to-government-calling-for-clearer-shielding-guidance-and-more

If you would like to take part in CF Trust survey on shielding experience please see link below-https://www.cysticfibrosis.org.uk/news/surveys-launched-to-capture-experiences-of-shielding

Monday 25th May, 2020

PATIENT HOME MONITORING- PART 2
 

The following links show you how to set up and use your Vitalograph lung monitor.

IMPORTANT **Please note that monitors sent from the Edinburgh CF centre have already had the batteries inserted and are already set up with your ideal FEV1, so you don’t need to do these “set up” steps. Also the video shows a plain mouthpiece, whereas we are recommending you use the supplied bacterial/viral filter as a mouthpiece, so please ignore the bit where it tells you to ‘wash the mouthpiece in warm soapy water’, just wipe down the filter with an alcohol wipe instead **

http://youtu.be/HFM3ApBU5P0 – How to set up spirometer and link to Project Breathe app

http://youtu.be/P3JO5IniER8 – How to perform spirometry with Project breathe app

Wednesday 20th May, 2020
 

PATIENT HOME MONITORING- PART 1

We will be dispatching spirometers to you very soon.

Please find links below containing detailed instructions together with a single page quick start abbreviated guide. A printed copy of both documents will be sent to you with your spirometer.

Spirometer- patient instruction guide

Spirometer- quick start guide

Please let us know if you have changed address recently or if you are shielding at an alternative address.

It is also important that we have your up-to-date mobile number as we are currently sending out CF virtual appointment links by text message.

You can contact the CF Nurses on Tel: (0131) 537 1762 or Mobiles- 07770326301/ 07770326302

Kindest regards,

CF Team

Friday 1st May, 2020
 

Global collaboration shows people with CF surviving COVID-19

A new study using international Registry data suggests encouraging health outcomes for those people with CF who have developed COVID-19, and highlights the need to stay safe.  It is important to note that this paper only reports on those CF patients who had a positive test for COVID-19.  In hospital we are also seeing CF patients (and respiratory patients) who have COVID disease, but test negative on COVID swabs.  Further information about this group will be available at a later date.  It is therefore still really important to shield and stay safe.

Please visit the CF Trust website for further information: https://www.cysticfibrosis.org.uk/news/global-collaboration-shows-people-with-cf-surviving-covid19

Thursday 16th April, 2020
 

NHS NEAR ME– Your new virtual outpatient appointment system

NHS Near Me- Patient Information Leaflet 

What is NHS Near Me? 

NHS Near Me is an alternative way to provide outpatient appointments. It offers a way to consult with a patient by video either at their home or at local NHS premises using internet-based video consulting. Near Me is a secure form of video consulting approved for use by the Scottish Government and NHS Scotland.

What do I need to use NHS near me? 

You need a device for making a video call such as a smartphone, laptop or tablet that is connected to the internet.

What happens at my next outpatient appointment? 

You will receive a text message or appointment letter with your appointment date and time. This will include a link to your virtual appointment. 

Please make sure we have your up-to-date mobile number.

What do I do on my appointment day?

• Enter your appointment link into your browser 5 minutes before your scheduled appointment (You will be asked to enter your name, date of birth and telephone number)
• Click on Start Call to access our CF waiting room
• Make the call from somewhere quiet and private
• Try to limit background noise (like children and pets)

Please note NHS Near Me appointments are strictly by appointment only. Please contact the CF Nurses on Tel- (0131) 537 1762 if you require an urgent assessment.

Example of NHS Near Me appointment. Please click here for a short video example –> NHS Near Me

For further information please visit the NHS Near Me dedicated website on the following link: https://www.nearme.scot/

Friday 10th April, 2020
 

NICE GUIDELINES

covid19-rapid-guideline-cystic-fibrosis-pdf-66141954497221 pdf
 

Thursday 9th April, 2020
 

Update for patients on Coronavirus pandemic

In this worrying time for people with CF, we wanted to give you some information to try to dispel some unhelpful messages which are circulating.

Remember, your CF Team is here for you, and will continue to offer you the best possible care we can in these extraordinary circumstances.  Some of you are asking:

Will people with CF be put on ventilators for coronavirus?The media constantly mention ventilators for people with severe coronavirus, so naturally people with CF are wondering whether they would be treated this way. 

Many people with CF are familiar with simple bedside “non-invasive” ventilators, which use a facemask. While these can be used, there is a risk they can spread infection to bystanders, so they are not used widely for coronavirus.
 

The ventilator treatment in the media is something different, called “intubation and mechanical ventilation “(IMV). For this, the patient is put to sleep (general anaesthetic), with a tube inserted down the throat, to allow air to be blown in and out of the lungs.  The first thing to say is that there are very good reasons why all CF teams try hard (even before coronavirus) to avoid IMV in CF. This is mainly because it completely removes the patient’s ability to cough and clear their chest, so sadly CF lungs often get much worse and not better with this treatment. People with CF often have short periods of ventilation (e.g. for gall bladder surgery) but when the main problem is chest infection, IMV is, unfortunately, usually unsuccessful in CF. 

As always, we will continue to treat each patient as an individual and offer them any treatment which is likely to help recovery. We hope you will understand however, that for people with CF, there are times when disease is so severe that nothing is gained by putting a patient on to a treatment which is highly likely to make their lungs worse not better, and which they are unlikely to survive. Alternative treatments may well be better in CF, for example, oxygen, antibiotics and another mask technique called CPAP. With these, not only can the patient continue with chest clearance physio, they can also eat, drink and speak with their relatives during treatment, none of which are possible with IMV.

Why are some patients being asked to consider decisions about resuscitation? In the media, resuscitation is usually shown as a dramatic intervention with electric shocks and chest compressions which rescues a patient in a crisis. In reality, success depends crucially on how well the patient is beforehand. In previously well patients with a straightforward cardiac arrest, it can work, but in patients whose heart stops as part of a severe underlying illness such as advanced CF or coronavirus pneumonia, resuscitation almost never succeeds, and risks becoming a futile and undignified assault on a dying patient.  This is why hospitals are asking all doctors to discuss ‘advanced care planning’ with all sick patients on admission, and why people with advanced CF are being asked to discuss “Do Not Attempt Resuscitation” forms with their doctors, to avoid such futile interventions. Although we understand that it is frightening to consider this happening to you, the value of dignity and appropriate treatment cannot be underestimated, so we hope you will think about this and consider discussing it with your CF doctor.

Please be assured that we will always act in your best interests, and will fight to offer our patients, as individuals, the best effective treatment for their situation. The difficult decisions described above are about trying to avoid inappropriate and ineffective treatment being imposed on you, where the risks greatly outweigh the benefits.

If you have any questions about this information please contact the CF team on 0131 537 1762.

 Your CF Consultants:

Dr Alastair Innes

Dr Helen Rodgers

Dr Robert Gray

Dr Crichton Ramsay

Friday 27th March, 2020
 

Our CF Psychologists have provided further information on managing your emotional wellbeing during the Covid-19 outbreak. Please follow the link below to visit the new section on our website.  https://services.nhslothian.scot/cysticfibrosisadultservice/ManagingyouremotionalwellbeingduringtheCovid-19outbreak/Pages/default.aspx

Thursday 26th March, 2020
 

We understand that you must all be extremely worried around the current situation we all find ourselves in and we will continue to try and forward on any additional information we feel you might benefit from.

 If we can reinforce you to continue to keep yourself updated with the guidelines on the following websites:-

• https://www.gov.uk 
• https://www.gov.scot 
• https://www.nhsinform.scot/
• https://www.cysticfibrosis.org.uk/news/uk-cf-medical-associations-statement-on-coronavirus

You might have seen on the Government website information regarding a letter being sent out to you. We have not heard anything official regarding this mail therefore we will continue to keep in touch with you.
  
 As we acknowledge that the prospect of 12 weeks of sheltering yourself is daunting we have put some information and attachments for you to look at if you feel you need to.
 
  The main bullet points for patients:

• Avoid excessive exposure to media coverage and social media
• Connect with others through calls, text, FaceTime etc
• Practice stress relief – whatever works for you – even if it is only for 2 minutes – exercise, relaxation, singing, music, mindfulness 
• Keep routine and structure to your day
• Keep busy (mainly to avoid the tendency to over-fixate on the news. ruminate, become hypervigilant to physical health etc).
• Practice self-care. (eat well, do your treatments, try to get good sleep, be kind to yourself – it is an anxious time for everyone – high anxiety is entirely normal right now – but we can try to manage it so that it does not take over).  “There is a lot of uncertainty.  When we focus too much on the things we can’t know or control, it only feeds anxiety and helplessness.  What can really help is to focus on the things that are in your control, like where you put your attention and what you are doing, here and now.” (Sommar, S. 2020).  What can you do to take care of yourself and those around you?

If anyone feels they need advice regarding their financial situation then we are encouraging you to get in touch with the Butterfly Trust in the first instance as they will have all the recent up-to-date information relating to support available from the Government.

Butterfly Trust Tel- (0131) 445 5590

E-mail- info@butterflytrust.org.uk

 Please do not order more than your usual amount of medication. The pharmacy teams are all working extra hard to get medicines to you, bear with them. It may take longer than usual as demand is extremely high. Please let us know if you are running out of a medicine and you are concerned. We will try our best to get medicine to you while you are self isolating. Your pharmacy should be able to deliver to you and will be able to give you urgent supplies without a prescription if you ask them.

 If we can answer any further questions for you please do not hesitate to get in touch via the CF office on Tel- (0131) 537 1762 or mobiles 07770326301/07770326302.

Please find useful links below:

coping-with-stress (1).pdf

Helping children cope with stress during COVID-19 outbreak.png

Staying well when social distancing.pdf

WHO mental-health-considerations.pdf

FACE COVID – How to respond effectively to the Corona crisis – by Russ Harris, author of The Happiness Trap.pdf

Tuesday 17th March, 2020
 

COVID-19 Important Information For You

Following the recent government statement on COVID-19, we are writing to update you on the changes we need to make to our CF Service. The situation is constantly changing so please refer to the government website.  Please remember that social media does not always provide balanced information or the latest evidence.

Firstly, we want to reassure you that the changes being made to the service will not impact on the team response to your enquiries which need to come through the CF Nurses via their CF office phone (0131) 5371762 or mobiles: 07770326301/07770326302.

We plan to prioritise CF clinic attendances according to clinical need, and many appointments may be cancelled. This is in line with all other hospital out-patient clinics, in view of the expected pressures on all hospital departments. The CF nurses will contact you prior to your clinic appointment to decide clinic need.

It is important that you ensure that you are vigilant around any change to your normal health status, and that you keep fully on top of your maintenance medication regime and physio clearance and exercise regimes.

Regarding your employment and the recent guidance to work from home, we can provide a letter to confirm diagnosis, if required.

The CF team are available as usual to assess you if you feel unwell, but please phone to discuss your symptoms, and we are able to facilitate prescriptions as needed.

At present the team will not be arranging routine home visits. 

For the latest advice regards developments around COVID-19, and keeping yourself well, you can look at:

CF Trust Website- https://www.cysticfibrosis.org.uk

NHS Inform Website- https://www.nhsinform.scot/

Scottish Government Website-https://www.gov.scot/coronavirus-covid-19/

Testing for COVID-19 is a government led strategy, and if you are symptomatic you must self isolate for 14 days. If your symptoms worsen, you must either phone your GP, or out of hours, NHS 24 on 111. You will then be triaged and may be requested to attend for review. This is the same as the general population, but please let us know if you have had to self isolate.

Lastly, please remember that this situation is changing rapidly, so keep an eye on the websites above, and we will update you as necessary.

Kindest regards,

CF Team

USEFUL LINKS

CF NEWSLETTERS

Please find below links to our CF newsletters:-

• CF Newsletter- Issue 5- March 2018.pdf
• CF Newsletter- Issue 4- May 2017.pdf
• CF Newsletter- May 2015.pdf
• CF Newsletter- August 2014.pdf
• CF Newsletter- January 2014.pdf

CF RESEARCH NEWSLETTERS

• CF Research- Jan 18 Vol 1 Issue 1.pdf

CYSTIC FIBROSIS: A POCKET GUIDE

Cystic Fibrosis: A Pocket Guide is an excellent interactive and educational app developed by the CF Nurses in the Dundee service. Download it for free to your device via either the Google Play store or iTunes to explore more about how Cystic Fibrosis affects the body.

App Link : https://play.google.com/store/apps/details?id=com.nuifish.cysticfibrosis&hl=en_GB

 THE CYSTIC FIBROSIS TRUST

The CF Trust is the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them. Explore the website above to find out everything you need to know about the trust.

CF TRUST WEBSITE: http://www.cysticfibrosis.org.uk

Contact Us

Cystic Fibrosis Trust

One Aldgate

Second floor

London

EC3N 1RE
 

           Tel: 020 3795 1555

                                     E-mail: enquiries@cysticfibrosis.org.uk

                                                      THE BUTTERFLY TRUST

The Butterfly Trust provides a variety of support services in the community

 for people affected by Cystic Fibrosis.

They offer support for the following:

• Benefits support (DLA/PIP)
• Housing applications
• Employment issues
• Access to financial support
• Free massage therapy
• Information and advice
• Transport
• Other specialist services

Contact Us

109/3 Swanston Road

Edinburgh

EH10 7DS

Tel: (0131) 445 5590

              E-mail: info@butterflytrust.org.uk

Or visit the websites listed below
 www.butterflytrust.org.uk
 www.facebook.com/butterfytrust
www.justgiving.com/butterflytrust
 
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KNOW YOUR GENOTYPE CAMPAIGN- 2015

The CF Trust have launched a new website dedicated to helping you discover information that is unique to your genotype. If you do not know your genotype then ask at your CF Centre at your next visit. If your genotype is already recorded, they will be able to tell you what it is. If it has not yet been identified, then they can arrange a test to find out.

For more information visit: http://www.genotypematters.org

PEER REVIEW- NOVEMBER 2014

The Scottish Adult CF service underwent Peer review in November 2014. This was a review of the service carried out by the CF Trust in partnership with the British Thoracic Society (BTS). The CF Trust reviews every CF service in the UK every 5 years.

To access the full Peer Review Report please follow this link:-
http://www.cysticfibrosis.org.uk/media/1572082/CC10-N-PR%20-%20Edinburgh%20adults%20V2.pdf