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Stories from October, 2019

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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

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