Pulmonary Fibrosis Support

Norfolk & Norwich University Hospital

Why join?


Why join?
Being diagnosed with any advanced lung disease, but particularly Idiopathic Pulmonary Fibrosis, usually comes as a shock. The descriptions “Progressive disease”, “incurable” and “life expectancy is ….” add to the anxiety and can be overwhelming at first. Learning to cope with this requires both education and emotional support.

Joining a PF support group can make a real difference. You can expect expert talks and discussions on topics such as: aspects of the disease; available treatments & their side-effects; understanding and dealing with symptoms such as breathlessness and coughs; appropriate physical exercising, including pulmonary rehab ; maintaining emotional health & well-being; and current research.

You will meet others facing the same issues as you, sharing their experiences and perhaps with practical advice. Being able to talk openly about your feelings with those who understand can reduce potential anxiety, depression and any sense of isolation. Carers attending these meetings find similar benefits.

The cup of tea/coffee before the main meeting is the place to start a new friendship (and buy your raffle tickets!)





When we meet


Meet at the Willow Centre, Cringleford, from 2-4pm. Tea/Coffee and chat available from 1:30pm (see CONTACT from main menu). Bring a friend or relative if you wish. There is no charge but a raffle is held to help cover our costs (donated prizes welcome).  N.B.  All future meetings will obviously be subject to the Covid-19 guidance at the time.

Cancelled due to COVID-19   Spring meeting Saturday 28th March NNUH Pulmonary Rehabilitation team         
Keeping Active – Pulmonary Rehabilitation and more!  Keeping active is important for all of us, including when you are living with a long-term lung condition.  Find out why muscle fitness matters, how PR helps and how to get on a PR programme.
Cancelled due to COVID-19 
Summer meeting Saturday 27th June Louise Bailey, Senior Lung Physiologist, Respiratory Medicine, NNUH  Breathing tests – why we do them and what they tell us.  Many people feel anxious about a visit to the lung function lab to do the breathing tests. Louise will explain what we are measuring and why the tests are important
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Group ZOOM Meetings (see latest Newsletter) have been arranged for 8th August, 26th Sept, 7th Nov and 19th December.  Sandra will be issuing invites and reminders shortly beforehand.  All are Saturdays at 3:30 to 4:30 pm


Physical Meeting Cancelled   Now by ZOOM 3:30 to 4:30 pm.  Autumn meeting Saturday 26th Sept World Pulmonary Fibrosis month – raising funds and awareness Let’s get the Norwich group on the ‘world fibrosis’ map!  Debra Chand, APF Services lead, will be joining us. Details of activity nearer the time.
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Who we are


Sandra Olive

Chair & Editor

Consultant Respiratory Nurse, Norfolk & Norwich University Hospital, with special interests in ILDs, Oxygen Therapy and Pulmonary Rehab.

Professor Andrew Wilson

Honorary President

Professor of Respiratory Medicine at UEA, Consultant Respiratory Physician, Norfolk & Norwich University Hospital, special interests in ILD and Asthma. Respiratory Research Lead at UEA.

Michael Donoghue

Web Design & Editing

Covid-19


This has been an ever-changing situation, but for people with chronic health issues the key points remain - good hygiene (hand washing) and physical distancing

For detailed and updated information the following sources are relevant.  (control+click to link) 

NHS Advice and Information  https://www.nhs.uk/conditions/coronavirus-covid-19/ 

Government Advice and Orders  https://www.gov.uk/coronavirus

APF Advice  www.actionpulmonaryfibrosis.org/coronavirus/ 

BLF Support and Advice  https://www.blf.org.uk/support-for-you/coronavirus 

Public Health Information  https://www.gov.uk/government/organisations/public-health-england 

 Helplines for patients and carers are: APF   01223 785725;   BLF 03000 030 555.


It is important to maintain fitness, even if mostly confined to ones home. There is now a section under "Pulmonary Rehab" giving advice on exercising at home.




Latest Newsletter


Our Newsletters are normally published shortly after each meeting, with a comprehensive report of the main Presentation. This can be very informative and serve as a valuable resource both for those at the meeting and those who were unable to attend. The newsletters are e-mailed to everyone, but if you need a physical copy to be posted please let Sandra know. Because of the COVID-19 situation and the absence of actual meetings, there are more frequent, but smaller, updating issues.

Virtual ZOOM meetings, Future outpatients appointments, and other updates.

  July 20 Newsletter.pdf.pdf  

Extra Issue - Coping with Confinement

Apr 2020 Newsletter.pdf

Coronavirus - Keeping safe and keeping fit. A shorter, updating Newsletter.

News Mar 20 Coronavirus.pdf

PF - What does it mean?  Sandra Olive celebrates the 6 years of the Support Group, followed by explanations of what "interstitial" means, the types of disease and their symptoms, diagnosis and treatment. January 2020 

News Jan 20 What is IPF.pdf

 



Previous Newsletters & Articles


Research Update  Professor Andrew Wilson, Consultant Respiratory Physician at NNUH also leads Respiratory Research in the School of Medicine at UEA. Here he explains the methodology and results of some of his research projects. October 2019

Research Update.pdf


Coping with Breathlessness- a Practical Guide.  A talk by Emma Dix and Sarah Heritage, Occupational Therapists at NNUH April.  Suggestions and approaches to reduce breathlessness by more efficient expenditure  of our energy. April 2019

 Coping with breathlessness.pdf

 

Coping with Coughs. A Presentation by Laura Grimsey, Senior Physiotherapist at NNUH.  Explanations of the different types of cough and how to deal with them. October 2018

Coping with coughs.pdf

What is Pulmonary Rehab?


It is a multi-component intervention for those living with long-term lung conditions aiming to improves physical fitness, the quality of life and give the confidence to self-manage. Each course consists of an initial assessment, six consecutive two hour sessions in a small group and a final discharge assessment. You will be given an individualised exercise programme and lung health education. The topics covered include:

* how do your lungs work?
* getting the best from your respiratory medications
* relaxation techniques, breathing control and chest secretion clearance
* anxiety, stress and depression management
* energy conservation
* what to do when breathing gets worse - self management planning
* further support available if things get worse
* eating well for good lung health
* oxygen therapy - will you need it?
* smoking cessation
* the importance of exercise and maintaining fitness after the programme

 Part one of the session is devoted to increasing your stamina and fitness with individually prescribed exercises. Not everyone has the same level of fitness so you will be carefully assessed at the start of the course to make sure that the exercises you do are suitable and safe for you.  

• Part two has refreshments then a talk from an expert speaker.  We want to increase your knowledge of lung disease and your confidence to cope with breathlessness, especially when it is worse than usual or you have a chest infection.  You will have plenty of opportunity to ask questions. 


Norfolk & Norwich University Hospital


The NNUH Pulmonary Rehabilitation programme takes referrals from the respiratory clinics and from in-patient clinical teams. 

It is led by Paula Browne, Senior Respiratory Nurse Specialist. Tel: 01603 289779  paula.browne@nnuh.nhs.uk .

They are held at The Willow Centre, Cringleford NR4 7JJ (see under "CONTACT") on Tuesday mornings.


Also at the Willow Centre and led by Paula are Singing for Breathing sessions on 2nd and last Fridays of the month, 1pm for 1:30 start.


Note: All above sessions are in abeyance due to the Covid-19 situation. Participants will be advised when they restart.

East, North & South Norfolk


    In these areas, Jackie Peyton is Clinical Lead for Pulmonary Rehabilitation          Email:     jackie.peyton@nchc.nhs.uk           Tel: 01263 710 585   

   ALL SESSIONS SUSPENDED DUE TO CORONAVIRUS                           

Locations

Chet Valley Med Practice, Loddon;  Wednesday 10 am - 12 noon

Diss Community Church (DC3); Monday 9.30 am - 11.30

Ketts Park Community Centre; Monday 1.30 am – 3.30 pm

Norwich Community Hospital; Thursday 10 am – 12 noon

Sheringham Splash Fitness & Leisure; Thursday 1.30 am – 3.30 pm
Dereham Hospital; Wednesday 10 am - 12 noon

Fakenham; not at present

North Walsham, Victory Swim & Fitness; Tuesday 2 pm - 4 pm

Norwich Riverside Leisure; Friday 1.30 am – 3.30 pm

Thetford, Healthy Living Centre; Friday 9:30am - 11:30 noon


N.B. Courses can also be run at Lakenham Community Hall on a Monday, if Norwich waiting list gets too long.


West Norfolk


In West Norfolk Pulmonary Rehab is undertaken by a team from British Oxygen Clinical Services     http://www.bocclinicalservices.co.uk/en/index.html         

Clinical lead is  Siobhan Hollier,   Tel: 0800 012 1858   email: Siobhan.hollier@nhs.net

ALL SESSIONS SUSPENDED DUE TO CORONAVIRUS

Sessions are held at:

Downham Market Methodist Church, Paradise Rd, Downham Market PE38 9JE - Tuesday afternoons

Hunstanton Community Centre, Avenue Rd, Hunstanton PE36 5BW - Wednesday mornings

Church Rooms, Gayton Rd, Kings Lynn PE30 4DZ  -     Thursday afternoon





   



 

Exercising at Home


With the need to Socially distance or isolate ourselves because of Coronavirus, it is particularly important to maintain or improve our general fitness and well-being. 

This is a series of videos from the British Lung Federation. It has exercises at 3 levels, covering; Warming Up, Strength Exercises, Aerobic Exercises  and Cooling down.   www.blf.org.uk/exercise-video

The NHS has guidance for older adults on improving fitness and well-being. (Control & Click to connect).

https://www.nhs.uk/live-well/exercise/physical-activity-guidelines-older-adults/

There are then 4 sets of exercises with clear down-loadable instructions and illustrations.

https://www.nhs.uk/live-well/exercise/sitting-exercises/                             https://www.nhs.uk/live-well/exercise/strength-exercises/

https://www.nhs.uk/live-well/exercise/flexibility-exercises/                        https://www.nhs.uk/live-well/exercise/balance-exercises/



National Charities


Action for Pulmonary Fibrosis (APF) are the leading charity specifically dedicated to improving the quality of life for patients living with pulmonary fibrosis and . APF focus on support, education, research funding and campaigning.  www.actionpulmonaryfibrosis.org 

The APF Support Line provides information or advice on living with pulmonary fibrosis. Call 01223 785725 and leave a message giving your name and phone number. Their team of specialist ILD nurses and patient ambassadors will call you back as soon as possible. 

The Pulmonary Fibrosis Trust provide practical, emotional and financial support where there is a need to those living with pulmonary fibrosis. They raise awareness of the illness and in particular the challenges people face on a daily basis. They can offer short breaks for PF sufferers and their families in the UK. https://pulmonaryfibrosistrust.org 


BLF is the largest UK lung charity. Its aim is the prevention, treatment and cure of lung diseases. It campaigns for clean air, sponsors research into lung conditions and provides information and support for sufferers. Helpline is available Weekdays 9am -5pm. (out-of-hours, messages can be left) Tel: 03000 030555      www.blf.org.uk 


BREATHE EASY Groups in Norfolk


Norwich

1st Tuesday in Month. 2-4 pm St Faiths Centre, Horsham St Faiths, NR10 3LF 0300 3030253

Monthly Meetings, Locally

Meetings cancelled due to Coronavirus

Kings Lynn

Last Monday in month. 1:30 - 3:30 pm Church Rooms, Gaywood Rd, Kings Lynn PE30 4DZ

Sheringham

1st Friday. 1:30 - 3:30 pm Sheringham Community Centre, Holway Rd, Sheringham NR26 8NP 0300 3030253

Thetford

3rd Wednesday. 1:30 - 3:30 pm Cloverfield Community Centre, Rosecroft Way, Thetford IP24 2TZ

Swaffham

If you are interested in attending a new group here, please contact victoria.bix@nhs.net

Contact


  • The Willow Centre Willowcroft Way, Cringleford, NR4 7JJ