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Management and Treatment of IPF – Update

Idiopathic Pulmonary Fibrosis, or IPF, is a growing problem worldwide with increasing numbers of people being affected. There is no cure and treatment options are limited to expensive anti-fibrotic drugs that can slow down the progression of the disease, but not reverse it or stop it completely. These medications have multiple side effects, which can further impact on patients’ quality of life, and only patients with moderate lung function impairment have approved funding to receive them.

The management of patients with IPF is multifaceted and consists of patient education and support, regular outpatient surveillance, symptom relief, pulmonary rehabilitation, annual vaccinations to prevent respiratory infection, supplemental oxygen, managing of comorbidities and ultimately palliative care or, in a minority of patients, referral for lung transplantation.

Following the publication of the ASCEND (A Phase III Trial of Pirfenidone in Patients with Pulmonary Fibrosis) and IMPULSIS (Investigating the Safety and Efficacy of Nintedanib in IPF) trials, two new anti-fibrotic treatments became available for patients who meet stringent National Institute for Health and Care Excellence (NICE) criteria. Pirfenidone and Nintedanib neither cure nor reverse the fibrosis, and have little impact on symptoms, but have been shown to reduce rates of lung function decline and, in the case of Pirfenidone, improve progression-free survival.

Both Nintedanib and Pirfenidone, which are available for use in patients with moderate IPF as defined by an FVC of 50-80% predicted, are associated with side-effects that can affect a patient’s ability to tolerate treatment. Commonly reported side-effects of both are gastrointestinal including diarrhoea, nausea, abdominal pain, and vomiting as well as weight loss and liver enzyme derangement. Additionally, Pirfenidone is associated with skin photosensitivity. These side-effects can be managed with dose reduction, anti-motility agents, taking medication with meals and avoiding sun exposure, but undoubtedly further impact upon health related quality of life.

Update by Dr Emma Denneny

A Gift For Life – A Guide to Making A Will

Leaving Breathing Matters a gift in your Will can help us continue our pioneering research.

This is a guide to preparing, making or amending (adding a codicil to) your Will. It does not constitute legal advice and we advise that you seek professional advice to write or amend your Will. Legacy gifts to registered charities like Breathing Matters, UCLH Charity are exempt from tax, and a solicitor will be able to give advice as to tax planning.

For a Will to be valid, it must be in writing and:

  • Made by a person who is 18 years old or over.
  • Made voluntarily and without pressure from any other person.
  • Made by a person who is of sound mind. This means the person must be fully aware of the nature of the document being written.
  • Signed and dated by the person making the will in the presence of two witnesses, who are not beneficiaries of the will.

If you are making your Will while on the premises of any of the UCLH hospitals or UCL research centres, please note that no member of UCLH or UCL staff can witness your signature if this organisation is a beneficiary. Such an act could invalidate the Will because a witness cannot be a beneficiary.

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

 

STEPS TO MAKING A WILL

1: Appoint a solicitor – A list of solicitors who deal with wills and probate in your area can be found on the Law Society website: www.lawsociety.org.uk

2: Information to take to the solicitor – Taking the following information to your solicitor will save time and ensure that all the information is to hand when drafting your Will. Remember to split the value of any joint assets or liabilities.  See checklist below.

  • Your details: Full name, address and post code, telephone number.
  • Value of Your Estate: Up-to-date information as to the value of your estate would assist. Things to think about would be: house, antiques/paintings, household contents, vehicles, jewellery, savings and investments, insurance policies, pensions, endowments and any other assets you would like included.
  • Liabilities: This will include any debts, ie. mortgages, loans, credit card balances, credit agreements, overdrafts, tax bills and any other outstanding debts.
  • Executors – The names and contact details of, ideally, two executors (see below for more information on executors).

3: Your wishes and who you wish to benefit – A Will ensures your wishes are carried out and will save problems for your loved ones who are left behind. Those who benefit are your “beneficiaries”. They may include family, friends and any causes that you would like to leave a Legacy to. The solicitor will require their contact details and how your estate is to be divided.

4: Leaving a Legacy to Breathing Matters – If you wish to leave a gift to us, this is called a “Bequest”. It helps if a Bequest is not too exact as types of equipment or names of treatments may change over time. If a Bequest is too specific, it may mean that we will not be able to meet all the conditions in the future and the Legacy may not be used to help with new research projects.

There are three main types of Bequests that you can choose to leave Breathing Matters a share of your estate:

Pecuniary Bequest: This is a gift of a fixed sum of money, and we recommend the following wording: “I give the sum of £.… (amount in figures and words) to Breathing Matters, UCLH Charity (registered charity no.1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Residuary Bequest: A gift made of the remainder/residual of your estate after all other beneficiaries are provided for and any debt, tax and administration costs have been met. We recommend the following wording: “I give all (or a % share) of the residue of my estate to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Specific Bequest: This is a particular item or asset left as a gift. An example would be a piece of jewellery, furniture or painting. We recommend the following wording: “I give to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

It is also a good idea to include the following wording at the end of the Bequest: “If, at my death, any charity named as a beneficiary in this Will or any codicil hereto has changed its name or amalgamated with or transferred its assets to another body, then my executors shall give effect to any gift made to such charity as if it had been made to the body in its changed name or to the body which results from such amalgamation or to which such transfer has been made.”.

5: Who will carry out your Will? – In your Will, you appoint “executors”. They are appointed to carry out your instructions left in your Will. It is advisable to have two executors. The solicitor will need details of your executors – who can be family, friends and/or professionals. Executors can be beneficiaries to the Will. It is usual to have someone who would understand financial matters. It may help to add a side letter, setting out your instructions to the executors.

6: Signing of a Will – Until the Will has been signed, it is not valid. It must be witnessed and those witnesses can not be beneficiaries under the Will.

 

AMENDING AND UPDATING YOUR WILL

It is always a good idea to review your Will after any major life changes for example, getting married, having a child, divorced or moving house. A change to your will is called a “codicil”.

A Codicil to an Existing Will

A codicil is a minor amendment or change to your Will.   Sample wording as follows: “I [name] of [address] DECLARE THIS to be a codicil to my last Will

  1. In addition to the provisions of my said Will, I GIVE to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) for its research purposes

EITHER:

  1. a) the sum of £……, or
  2. b) [all or a specified %] of the residue of my estate
  3. IN WITNESS whereof, I have hereunto set my hand this [day] day of [date] SIGNED as a codicil in the presence of: (space for the names, addresses and signatures of witnesses”.

A solicitor can assist you with the final wording.

 

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

You can help us make a difference!

 

 

 

Holst Singers’ Charity Christmas Concert

Holst Singers Christmas Concert in aid of Bronchiectasis research at UCL

Friday 13th December 2019,  7.30pm, St Pancras Church

Tickets now on sale (£25 each) for a festive treat of traditional and contemporary seasonal music and readings.

The Holst Singers annual Christmas Concert to raise funds for bronchiectasis research at UCL will once again take place in the neo-classical setting of St Pancras Church (Euston Road NW1 2BA) on the edge of Bloomsbury, just a short distance from UCLH. As in previous years, Charlotte Green of BBC Radio 4 will delight us with readings and there will be audience carols as well as a feast of seasonal music performed by the Holst Singers.  Tickets will be available on the door, but to be sure of a place at what will be one of the most wonderful evenings of the year, booking tickets early is advisable.

For further information and tickets, please contact Jane Walker either by telephone 01732 366346 or by email missjanewalker@hotmail.com

Tickets are also available online by clicking this link https://bmchristmasconcert.bpt.me

Donation received from Profile Pharma, towards the costs of staging this concert

Sign up for a great September challenge; deadline for registration 9.8.19

Breathing Matters has places at some amazing fun and adventurous challenges coming  up – BUT YOU NEED TO REGISTER BY FRIDAY 9th AUGUST 2019!!!

Descente London Duathlon events, Richmond Park, Sunday, 8th September 2019

This is the world’s biggest duathlon on closed roads in beautiful Richmond Park in South West London.

Our places are cheaper than those advertised on their site:

Their price Our price Fundraising
Full £88 £80 +£250
Half £82 £80 +£250
Relay £139 £100 +£250
Ultra £144.50 £100 +£250

We simply ask that you raise a further £250 for Breathing Matters per participant.

More info on the event is at https://londonduathlon.com/

 

Finsbury Park Rough Runner – a Fun Obstacle Course for all Levels, Saturday 7th September 2019 and Sunday 8th September 2019

The Rough Runner is a unique obstacle course challenge; bounce on big balls and climb your way through the extraordinarily fun course before taking on the energy sapping travelator.

You can choose from the 5K or 10K course.

What others say:

  • “Loved every second of it! The course was fun and not all the obstacles were challenging so overall was a very fun experience!”– Chelsie
    “Had a very fun time for our first even like this, even though we don’t run a lot it was a lot of fun and wasn’t too competitive.” – Brandon

Places with Breathing Matters are £40 and we ask that you raise at least £60 per runner.

If you want to register for any of these challenges, email breathingmatters@ucl.ac.uk but don’t delay registration deadline is 9th August 2019.

 

Get Out of Breath for #Breathtember

 

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

https://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

To help raise awareness, we ask that supporters tweet different challenges during September including the term ‘#Breathtember and ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath for you could mean:

  • Cycling around your local park
  • Doing a colourful or musical 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wondrous London bridges
  • Blowing bubbles … or windmills!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge including the hashtag ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  Add a photo if you like.  This September, we want as many people as possible to see the term ‘#Breathtember’.

Follow us on Twitter for further details: @Breathingmatter 

twitter

 

 

SUMMER SALE on global adventure challenges – grab a bargain for 2020!

Global Adventure Challenges are giving our supporters a fabulous 20% off registration for all UK and overseas challenges in 2020.

This offer is valid until the end of July 2019.  You need to quote ‘SUMMER20’

 

Here are a few examples, but there are many, many more to choose from:

  • Vietnam to Cambodia Cycle
  • Sahara Desert Trek
  • Great Wall of China Trek
  • India Cycle Challenge
  • Snowdon at Night
  • The Alps Trek
  • Lapland Husky Trail
  • Yorkshire 3 Peaks
  • Wales End to End
  • Land’s End to John O’Groats Cycle
  • London to Paris Bike Ride

A full list of challenges can be found at: https://bit.ly/2WuJOJM

Grab a bargain … you know you want to!

 

 

 

 

 

Fireworks – Have your say

The House of Commons Petitions Committee is currently looking at the use of fireworks following a number of petitions about fireworks over the last three years.  A recent petition signed by nearly 300,000 people calls for a ban on the sale of fireworks to the public, and for fireworks displays to be restricted to licenced venues.

If you have a respiratory condition and have been impacted by fireworks, then you might be interested in attending the Petitions Committee on Fireworks on Tuesday, 2nd July 2019 at 7pm at Westminster.

At this event, you will be asked how fireworks affects your respiratory condition.  The Committee is keen to hear about people’s experiences and thoughts on potential solutions to addressing health concerns around the use of fireworks. Your views will help shape the Committee’s thinking on this topic. 

For more information and to register your interest in attending this event, please visit https://www.eventbrite.co.uk/e/petitions-committee-fireworks-event-2-july-tickets-62221407906

 

 

 

Who Wants To Be A Superhero for the Day – New 5K Run in the City of London

Would you like to be a real superhero?

Would you like to dress up as a superhero and run 5K through the City of London along the Thames?

Then – ‘Superhero in the City’ will be right up your [London] street!

This fun inaugural race event is on Thursday 13.6.19 at 7pm. It starts at the North side of the Millennium Bridge, via the Southbank, then crosses back over Southwark Bridge and continues along the North Embankment towards St Paul’s Cathedral.

It’s the first race of its kind and we just know that this will be a popular event for years to come.

Why not be the first to be a Superhero this year!

Breathing Matters has places for £24 each. But don’t delay, you need to register by 20.5.19 to guarantee your place: https://bit.ly/2GOk9V6  We just ask that you raise £50 for Breathing Matters towards our valuable research.

Tips for Surviving Hay Fever

Itchy eyes, runny noses, sneezing … oh no, it’s Hay Fever season again!!! 

Fear not, this article will help you prepare.

What is Hay Fever?

Hay fever (seasonal allergic rhinitis) is an allergy to pollen. The pollen season separates into three main sections:

  1. Tree pollen – late March to mid-May.
  2. Grass pollen – mid-May to July.
  3. Weed pollen – end of June to September

To get the latest pollen forecast, view the Met Office weather map which provides a UK forecast of the pollen count and provides any hay fever sufferers with an early warning.

Who Gets Hay Fever?

Hay fever is very common. It affects about 2 in 10 people in the UK. It often first develops in school-age children and during the teenage years, but may start even later in life. Hay fever tends to run in families. You are also more likely to develop hay fever if you already have asthma or eczema. A tendency to these atopic illnesses can run in families.

Hay Fever Symptoms

  • Common symptoms include sneezing, runny or blocked nose, itchy eyes, mouth and throat. Less common are headaches and hives.
  • Asthma symptoms – such as wheeze and breathlessness, may get worse if you already have asthma. Some people have asthma symptoms only during the hay fever season.
  • The symptoms may be so bad in some people that they can affect sleep, interfere with school and examinations, or interfere with work.

Hay Fever PreventionHay Fever Fact

Although it is very difficult to avoid exposure to pollen, there are a number of measures you can take that will help you to minimise exposure and ease the severity of your hay fever symptoms. Following these steps may help provide some relief from your symptoms:

  • Keep windows closed when at home and overnight. Most pollen is released in the early morning and falls to ground level in the evenings when the air cools.
  • When outdoors, wear wrap-around sunglasses to keep pollen out of your eyes. For any outdoor tasks, such as gardening, hay fever sufferers should wear a mask.
  • Some people find smearing your nostrils with vaseline to capture the pollen helps.
  • Avoid drying clothes outside when pollen counts are high. If you do, shake items before bringing them inside.
  • Keep car windows closed when driving and fit a pollen filter to reduce the impact of pollen spores. Ensure your air conditioning is set to recirculate the air inside.
  • When indoors: vacuum regularly and clean surfaces with a damp cloth. The British Allergy Foundation have a list of ‘approved’ anti-allergen vacuums that help to filter out pollen on their website, allergyuk.org.
  • Avoid bringing fresh flowers indoors.
  • Don’t allow smoking in the house as this will irritate the lining of your nose, eyes, throat and airways, making your hay fever symptoms worse.
  • After being outside, shower and wash your hair to remove pollen.
  • Grooming and washing pets more frequently at this time of year, to remove trapped pollen from their coats, can be helpful too. Pollen levels tend to be higher on warm, dry days.
  • The Metereological office offers a useful five day pollen forecast (metoffice.gov.uk), so you can prepare for high pollen count days.

Hay fever sufferers can benefit from a wide range of non-drowsy medication which can be prescribed by your GP, or alternatively purchased over the counter from your local pharmacy.  Starting this medication two weeks before the season can prepare your body.

Your GP or hospital consultant can help you find the most appropriate treatment for you especially if you also have asthma and other allergies. Treatments include antihistamine tablets or nasal sprays, corticosteroid nasal sprays and drops, nasal decongestants, eye drops, immunotherapy, and alternative therapies.

Treatment for Severe Symptoms

Rarely, a short course of steroid tablets is prescribed for a week or so. For example, for students sitting examinations,   A short course is usually safe.   However, you should not take steroid tablets for long periods to treat hay fever, as serious side-effects may develop.

Dr Harsha Kariyawasam, Consultant Allergist at the Royal ENT Hospital says, “‘The most important step that an individual with allergic rhinitis should do is to have an accurate diagnosis. The exact allergen provoking symptoms should be identified. Where possible, allergen avoidance measures should be instigated. Treatment with medication, introduced in a step wise manner should also be undertaken. We are getting very good treating allergic rhinitis and there are several effective new treatments available. Allergy desentisation by a trained allergist is possible and there are several exciting vaccines either in practice or in development. Everyone deserves to enjoy spring and summer!”.

Pulmonary Fibrosis Wish List

  • £5 – For equipment to take blood for testing antibodies for a patient with IPF.
  • £50 – Allows us to grow individual fibroblasts (these are the cells that produce the scarring) in the laboratory from the lungs of patients with IPF to do further studies.
  • £500 – Allows us to isolate the platelets from patients with IPF so that we can examine them in the laboratory and compare them to platelets from people with normal lungs.
  • £1,000 – For specialised antibodies to help us develop a novel blood test for early detection of PF.
  • £1,500 – For accessories for our lung function equipment for one year.
  • £3,000 – For a study to assess whether treatments for rheumatoid arthritis help the lung disease associated with RA.
  • £5,000 – To provide all the equipment and running costs for a ‘Western Bot’ which allows us to look at abnormal proteins in the lungs of patients with pulmonary fibrosis.
  • £10,000 – For a research nurse for a year working 2 days a week to collect valuable patient data and samples for research.
  • £50,000 – Pump priming a blue sky research proposal: allows a senior clinician to undertake a substantial period of research (a year or more) as a named research fellow to develop an hypothesis that is then submitted for full funding (£300K+).