A Mesowarrior Diary Living With #Mesothelioma #asbestos -The MesoUK Advisory Board Meeting I Attended


Once again we travelled up to London this time to a Mesothelioma UK Advisory Board which I’m a member of alongside the Meso UK Nurses and my Mesowarrior friends.Also I met a lady I have made friends with on facebook from Tayside Support Group. It is great to meet in person even if she did have to fly down from Scotland.

HASAG were present as well and Jeremy Steel it was great to meet up again.

So we were back in the Field Fisher Offices, a place I love as the view is so great.riv2

I would never tire of this if I worked here and I find all the people working there feel the same.

Peter Williams Of Field Fisher meet me to shake my hand and is so happy to see how much I have improved.

It tickles me just how many people know me and my story. I can’t help to be so proud to be able to talk about all the care I have had. I’m so proud of the NHS and MSD.

So we ran through the minutes of the last meeting and then discussed so many things in more detail They are wanting 28 nurses and so the funding has to be stepped up.

It was bought up about legacy’s

I said have just a little write up as a permanent spot in the News Letter but they are worried about how other Patients would feel about it. I did say don’t worry about upsetting us as we are positive people and we have to discuss so many things when we have been diagnosed. I have been though so many things in my 7 years I seem to be able to discuss anything now.

I don’t think it is wrong as Macmillian do it.

https://www.macmillan.org.uk/donate/gifts-in-wills/index.html?gclid=CPaki-G0qtACFawW0wodFF4CTg

Gifts in wills

Gifts in wills are an amazing way of continuing your support long into the future.

In the future, doctors and nurses are going to get better at diagnosing cancer earlier, and treating it. But the fact is almost half of us will get cancer at some point, and have to go through some tough times before we hopefully get better. And that includes the people we love.

So I don’t see why mesothelioma Uk cant do this as well. We all know how hard it is to get funding.

Most Mesowarriors ask for no flowers at their funeral and have the Donations to MesoUK.

In fact it was discussed to link up more with Macmillan as they have a great deal of helpful information so why rewrite everything. I will Blog more using the links and put more links on my Groups in Facebook.

On The MesotheliomaUK Web Site they do give info on the subject

http://www.mesothelioma.uk.com/supporting-us/leaving-a-gift-in-your-will-to-support-mesothelioma-uk/

What is a Legacy?

A legacy is ‘a gift to someone in a Will’

In order to bequeath a legacy to any charity like ‘Mesothelioma UK Charitable Trust’, you must make sure it is included in your will.

The three main types of legacy that you could leave to a charity are:

Residuary Legacy:

Once all other gifts have been made i.e to your family, friends or others from your estate, a residuary legacy is a gift of the remainder or part of your estate,  it is a fraction of your estate rather than a cash sum and will retain the value over time.

Pecuniary Legacy:

Is a monetary gift of a specified amount.

Specific Legacy:

Is a gift of personal possessions, this may be land, buildings, furniture, antiques or jewellery.

How do I Leave a Legacy?

To include Mesothelioma UK Charitable Trust in your will is an easy, straight forward and cost effective way to support us. You would need to add a short statement (clause) to your will and we would always advise you to use your solicitor to assist you.

“I Don’t Have Much to Leave”

A common misconception is that legacies can only be large amounts of money and this is just not the case. You could leave as little as £1.00 in your will. Any gift or legacy no matter how large or small, is important to the charities you support and without your donations, we cannot survive.

What is a Pledge?

Gifts that are left in wills are really important to charities. However, even if you haven’t made a will, making a pledge to leave a gift in your will in the future is an ideal way that really helps your chosen charity find out about your future intentions which will then enable them to plan for the future. Pledges are not legally binding so by filling out a form you will not be committing yourself! You are simply allowing your chosen charity to confidently estimate future support for their causes.

What About Tax?

Charities are generally exempt from inheritance tax so gifts to Mesothelioma UK Charitable Trust are tax efficient. Many people use gifts to charities to stay within the inheritance tax threshold, thereby avoiding the tax altogether.

What is Inheritance Tax?

We advise you to seek professional advice in respect of Inheritance Tax as the rules can be quite complicated and there could be quite a few exemptions/reliefs that may apply, also inheritance tax can be open to government changes.

What if My Circumstances Change?

If you include a properly worded legacy in your will, it will allow you to take account of any changes that may occur in your personal life. You can be safe in the knowledge that if your circumstances change your will automatically takes care of these changes so that you are able to look after yourself and family first, whilst still being able to take account of your chosen charity, but only if there is money left over from your estate after you depart.

A Guide to Will Making

Making or updating a will is a lot easier than most people think. We have put together and answered a few questions that you may have and why everyone should have a professionally written will and the best way to go about it.

Why Do I Need A Will?

It is important that everyone over the age of 18 years has an up to date professionally written will, and while we cannot predict the future, we can make sure that after our death our wishes throughout our lifetime are carried out, and thereby help to relieve our families of added stress at a time of bereavement.

Although parts of your estate may go to your family, if you have not made a will it maybe that your spouse will have to share their inheritance with persons/relatives you would not want or wish to inherit from your estate. Your family may also have to pay Inheritance Tax, which is currently charged at 40%. If there were no relatives, your estate would then go to the Crown.
Having a will gives you and your loved ones peace of mind; it also means you can save your beneficiaries from paying unnecessary taxes. You may want to leave gifts for other family members or your friends or a charity, and it gives you the opportunity to decide about any wishes you may have about your funeral.

Can I Draw Up My Own Will?

When making a will there are issues that need to be considered, you may wish to create your own or get over the counter templates but unfortunately, they can lead to various problems without professional advice, and they may not easily be rectified after your death. There maybe important details left out or it could lead to the will being made invalid or an unexpected tax bill. When dealing with these issues it is always advisable for you to get professional advice from your solicitor.

Is It Expensive?

It will depend upon how complex your affairs and your wishes are, but making a will is easier and more affordable than you may think. We recommend you contact your solicitor in the first instance and be sure that you and the solicitor are clear about your wishes. You can request an estimate at no commitment before you decide.
You may already have a will and may want it to incorporate a legacy; your solicitor will attach a written instruction called a Codicil (a Codicil is a document used to change a will that has already been made). Do not change the will yourself as it may invalidate it.

Contact the Law Society for details of law firms near you.
England and Wales http://www.lawsociety.org.uk, or call 020 7242 1222.
Scotland http://www.lawscot.org.uk, or call 0131 226 7411.

The author accepts no responsibility for actions taken as a result of the above article. When considering your will, a legacy or a pledge legal advice should always be sought for the most up-to-date information and advice tailored to meet your personal circumstances. 

If you would like to discuss leaving a legacy to the Mesothelioma UK Charitable Trust in the future please contact Jill Lemon, Fundraising & Marketing Manager on Freephone 0800 169 2409.

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There will be more funding in Scotland at Glasgow  for A procedure called a Percutaneous Spinal Cordotomy may help relieve pain that has not responded to conventional pain medicines. The procedure involves heating some of the pain nerves in the spinal cord that send pain information to the brain. It involves placing an electrode (about the size of a blood test needle) into these pain carrying pathways, using special x-ray guidance. It is done under a local anesthetic; the patient is awake so that they can communicate any sensations felt during the procedure. Patients who have been treated with this procedure can gain long-term pain relief (months to years). Sometimes the procedure can be unsuccessful because the pain nerves cannot be identified safely. Any risk should be discussed with the doctor. There are currently four centres offering a Percutaneous Cordotomy service to patients – these cover the South, North, North-West and Midlands. They have all agreed to have their details circulated.

Drs Mike Williams or Nick Campkin, The Pain Clinic, Level D, Queen Alexandra Hospital, Cosham, Portsmouth  PO6 3LY
Tel: 02392 283271 Fax: 02392 286888  Email:  michael.williams1@porthosp.nhs.uk  nick.campkin@porthosp.nhs.uk

Dr Paul Cook (Consultant in Palliative Care & Anaesthesia), Room 21, Central Offices, Pennine Square, Royal Oldham Hospital, Rochdale Road, Oldham, OL1 2JH
Tel: 0161 656 1912 Fax: 0161 656 1929 E-mail: paul.cook@pat.nhs.uk

Dr Mahohar Sharman (Consultant in Pain Management), The Walton Centre for Neurology and Neurosurgery NHS Trust, Lower Lane, Liverpool, L9 7LJ.
Tel. 0151 529 8294 (Pain Clinic) or 0151 529 2098 (Aintree Palliative Care Service)

 

I have to admit I really must keep an eye on information as I hadn’t realised this had been update and things are changing fast nowadays.

http://www.mesothelioma.uk.com/information-and-support/about-mesothelioma/symptoms/pain/

Peritoneal is the cinderella of Mesothelioma But there are 2 trials that are including this rarer Disease with the new drugs coming through they are including so if you have Peritoneal please contact St Barts or Leicester and ask. We don’t get anywhere unless we chase.

It was soon dark and London Lit up before us so we all made our way to the Tube Station and went our separate ways. It had been a great meeting.

photo_20161114_163018-1

Our train was packed and we stood with 3 men that were Carpenters and were putting in Kitchens in Pent House suits that were costing 3 million. A door handle costing £300 ?

Then one man started talking about his son of 6 months weighing 2 stone ???

He showed a photo and I asked to see it. He was just a normal little boy but he looked about 2 years old. goodness knows how big this baby will grow to.

We walked through the train to number 4 carriage as it splits at Faversham and I was laughing as all the men were asking “Do you want my seat” bless them all I love the kindness shown but we were walking through and finally found a seat in the right carriage.

We were soon home and dog walked and diner cooked.

It has been a good day.

 

 

 

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