Moving if you have MCS.

And family or friends are essential.

Media Release
Date: 24.10.2016
Fragranced products: risks for people and profits?
A University of Melbourne researcher has found that over one-third of Americans report
health problems—from asthma attacks to migraine headaches—when exposed to common
fragranced consumer products such as air fresheners, cleaning supplies, laundry products,
scented candles, cologne, and personal care products.
The study also found that fragranced products may affect profits, with more than 20% of
respondents entering a business, but leaving as quickly as possible if they smell air
fresheners or some fragranced product. More than twice as many customers would choose
hotels and airplanes without fragranced air than with fragranced air.
In the workplace, over 15% of the population lost workdays or a job due to fragranced
product exposure. Over 50% of Americans surveyed would prefer fragrance-free workplaces.
And over 50% would prefer that health care facilities and professionals were fragrance-free.
The research was conducted by Professor Anne Steinemann, from the University of
Melbourne School of Engineering, who is a world expert on environmental pollutants, air
quality, and health effects.
Professor Steinemann conducted a nationally representative population survey in the United
States, using a random sample of 1,136 adults from a large web-based panel held by Survey
Sampling International (SSI).
The results are published in the international journal Air Quality, Atmosphere & Health.
When exposed to fragranced products, 34.7% of Americans suffer adverse health effects,
such as breathing difficulties, headaches, dizziness, rashes, congestion, seizures, nausea,
and a range of other physical problems. For half of these individuals, effects are potentially
disabling, as defined by the Americans with Disabilities Act.
“This is a huge problem; it’s an epidemic,” says Professor Steinemann.
Fragranced products are pervasive in society, and over 99% of Americans are regularly
exposed to fragranced products from their own use or others’ use. Reports of adverse health
effects were as frequent and wide-ranging across all types of fragranced products.
“Basically, if it contained a fragrance, it posed problems for people,” Professor Steinemann
said.
Professor Steinemann is especially concerned with involuntary exposure to fragranced
products, or what she calls “secondhand scents.”
She found over 20% of the population suffer health problems around air fresheners or
deodorizers, and over 17% can’t use public restrooms that have air fresheners. In addition,
over 14% of the population wouldn’t wash their hands with soap if it was fragranced.
Media Release
Date: 24.10.2016
Over 12% of the population experience health problems from the scent of laundry products
vented outdoors, over 19% from being in a room cleaned with scented products, and over
23% from being near someone wearing a fragranced product.
More generally, over 22% of Americans surveyed can’t go somewhere because exposure to
a fragranced product would make them sick.
“These findings have enormous implications for businesses, workplaces, care facilities,
schools, homes, and other private and public places,” said Professor Steinemann. For
instance, a growing number of lawsuits under the Americans with Disabilities Act concern
involuntary and disabling exposure to fragranced products.
Professor Steinemann’s earlier research found that fragranced products—even those called
green, natural, and organic—emitted hazardous air pollutants. However, fragranced
consumer products sold in the US (and other countries) are not required to list all ingredients
on their labels or material safety data sheets. Nearly two-thirds of the population surveyed
were not aware of this lack of disclosure, and would not continue to use a fragranced product
if they knew it emitted hazardous air pollutants.
Professor Steinemann’s research continues to investigate why fragranced product emissions
are associated with such a range of adverse and serious health effects.
In the meantime, for solutions, Professor Steinemann suggests using products that do not
contain any fragrance (including masking fragrance, which unscented products may contain).
She also recommends fragrance-free policies within buildings and other places.
“It’s a relatively simple and cost-effective way to reduce risks and improve air quality and
health,” she explains.
Professor Steinemann has also completed a survey of the Australian population, with results
expected to be published soon. “The numbers are similarly striking,” she said.

Harvard Medical School Associate Professor Speaks about MCS: Video | Seriously “Sensitive” to Pollution (seriouslysensitivetopollution.org)

Video introducing MCS

If you have not familiarised yourself with the above, don’t judge us. And don’t tell us what we can do or should be able to do.

How long?

My body and soul have had to deal with a lot of threats, mainly of homelessness and poverty in the past few months. The following come from letters sent by Penningtons on behalf of my brother.

Example 8th April.

“Alternative action may include an application to Court under the Trusts of Land and Appointment of Trustees Act 1996 for an order for sale of the property and/or payment of occupation rent to compensate my client for not being able to occupy the property himself and benefit from his share in it.”

[Client already has two homes. One much larger than mine. I don’t know the other.]

8th July 2021.

“To be clear, our client does not permit your client to continue living in the property indefinitely. Your client has no right to reside in the property and it is our client’s position that the administrator of the Estate, Jackie should be pro-actively giving notice to your client to vacate the property. It would be preferable if our clients could agree matters via an enforceable consent order so that your client was unable to renege. Otherwise, Jackie will need to issue proceedings in the near future.”

[No right to live in my home? I co-own 25% of the property, as does my brother.]

“Ensuring a sale of the property in a reasonable time-scale would appear to be precisely in line with the deceased’s wishes.”.

[According to the Statement of wishes, she wanted me to live in the house for as long as I wanted and not to be subjected to pressure. Text: “Statement of wishes. I hereby state that it is my wish that my daughter Ellen be allowed to remain in the house at 23 Melbourne Rd for as long as she desires. No pressure should be exerted upon her to move.” Signed by Felicie Goudsmit. My mother. 10th August. 2009]

“Our client is aware that your client is likely to have the financial means to buy out his share particularly as she is able to afford a donation of £50,000. Our client does intend to draw this to the attention of the Court should your like plead a lack of financial means to move.”

[Anyone know a property one can buy for £50000? And can anyone tell the difference between £50000 and £600k-£700k? Pennington’s can’t. So much for “Our client does intend to draw this to the attention of the Court should your like plead a lack of financial means to move.”

23rd September. Following a letter from my lawyer a few days earlier, noting a delay.

“If your client wants to reach agreement then she does need to engage with the process and provide the information requested so that we can progress matters.
If she does not, then our client will have no option but to press Mrs Randall to commence possession proceedings against your client. The current status quo cannot continue and the estate needs to be administered.”

21st October 2021

“Our client remains hopeful that we will be able to resolve matters without involving the court. However, as you will see from the above, the administration of the estate cannot be allowed to continue indefinitely.”

8th December 2021

“Please confirm that the property can now be placed on the open market. If we do not receive your agreement to this by the end of this week, we will leave it with Mrs Randall to commence possession proceedings as soon as possible.”

[By this time, he had rejected various proposals, including one which included his quarter of the house at probate, plus the rest, with loans, half the cost of money left to the beneficiaries, and half the costs of essential repairs 2020. It wasn’t enough. and in his two offers, he wanted me to pay everything left to the beneficiaries and nothing towards repairs. and I had to pay backdated rent to may 2020 which had not been discussed, let alone agreed. He rejected my offer to pay rent from august 2021, after I had finished the work of clearing most of our parents’ belongings. Very exhausting and emotionally painful work.]

Dear reader,

You can get an impression of the threats made on several occasions, all of which ignore my disability and the pandemic (when the stamp duty holiday caused many to move, builders to become unavailable for months and the price of houses to rocket.)

Those threats have taken their toll on my mental and physical health. Sometimes, I feel that they will lead to a heart attack. I find it harder to breathe. I have to amend my will, but solicitors are overextended. Indeed, my old one is on sick leave. My income has reduced as I now get a state pension and PIP. Because of my age, I’ve lost two benefits.

If the stress becomes too much and you don’t hear from me for a few months, you know my body gave up and why. Please remember me as an honest person who fought (and often paid) for those she thought less well off. Knowing what would happen, perhaps I shouldn’t have but I could not have guessed what would happen after my mother’s death.

Ellen

11th December 2021.

Life at the moment is very scary and not just because of the repeated threats of eviction. It’s largely the pandemic. A lot of carers have found other, better paid jobs. And I have so many sensitivities, I can’t digest a lot of food. No ordering of pizzas and currys. I’m ok now but the 23rd looms.

PS. Rereading the solicitor’s advice to my mother, it seems that she forgot to tell mum that a Statement of Wishes had no legal standing. Also saw that mum didn’t think I could cope living alone, even in a small house. She was right. I depend on carers. I can’t do the required cleaning etc. Too exhausting. And Waitrose delivery and other services do not offer the fresh meat I use to make my soup, Maris bakers or bananas I can digest. I will struggle if I can’t find enough carers by the 23rd when the agency I am with now stops (lack of suitable people etc.). The voluntary service around here isn’t that good. Keeping fingers crossed.

Where do these errors come from?

I received an email today from a social worker containing lots of errors, allegedly from my GP. Here is a part of the email (”) and my response.

‘Dear Ellen,

Xxx

Dr AA also advised that over the last decade or so a number of possible options have been offered to you including psychiatric support from the Richmond Wellbeing Service,’

Yes, but I was never referred to the latter.

‘Physiotherapy’
Taken up and after nhs sessions ran out, switched to physio mrs S whom you can contact to confirm.  Cc above. 

‘Occupational Therapy’
Contacted but they felt there was nothing they could offer me. I had to buy an electric scooter myself and they could not advise me which would suit me best.  So I engaged a private OT and tried a few. They have no suspension so my poor spine complained. Still looking. 

‘and support from the Community Matrons (CP)’.
She saw me once and was hostile.  Must have perceived an illness like ME as hysteria. Asked me not to contact her again.  So I didn’t. 

‘Dr AA confirmed that none of these options were taken up’
Factual error. The opposite is true.

‘and as such, It is not clear what help is available to you within the local authority and the Primary Care Trust based on the currently available resources.’

.. to confirm that I have been honest, I am ccing this email to mrs S who has known me and mum for many years. She can confirm that I am pro-active in seeking help from professionals like her. Please contact her. I let her see Y’s last email that really upset me.  She was most supportive. 

We have to get to the bottom of this inaccurate view of me as a total idiot and liar. It helps no one, except Y.

Thoughts.

You get the picture. The GMC requires doctors to keep accurate records and to correct errors if flagged up. Ergo, I’ve emailed the GP to alert him to the number of mistakes. Errors can only undermine treatment.

How can society function if we are all subjected to and judged on the basis of inaccurate information, often negative, about ourselves and others? It’s dangerous. Am I the only soul who thinks that? And whatever happened to checking? What is the pandemic doing to us?

Looking forward to a more peaceful 2022

When I read that the executor would not go to court for a court order to evict me as long as brother and I were negotiating, I knew that he would stop negotiating. I plucked up the courage to make him a fair offer (cost of half the house minus a few debts, all agreed by executor) and yesterday, the email came. This is more or less what it said. You can afford to buy me out (but I have no idea how much he wants, there’s the little matter of the debts I am owed and if I pay?, there will be virtually nothing left for care and food as I’m on a state pension and PIP), and oh yes, would I like to place the house on the open market asap. If not, the executor will begin court proceedings for possession. (Merry Christmas to you too).

2021 has been a year where almost everything that could go wrong, did. Emails didn’t arrive, people didn’t return calls at the appointed time, doctors didn’t arrange tests asked for by consultants, solicitor with great ideas suddenly announced after a month that she was going on maternity leave, others were so busy, they couldn’t rewrite my will, and carers left the agency for better paid jobs so there was no capacity for the likes of me. Still, although the hours diminished, the fees stayed the same. I objected so having to find replacements who will shop for the basics. Being disabled during a pandemic is not easy.

Brother is unsympathetic to the idea that equity release is b…y expensive. And totally uninterested in the fact that I’m disabled, or someone who has always relied on benefits which are far from generous. My house is adapted and I can breathe.

There’s still some clearing to do, and chasing solicitors for wills, so haven’t time for additional stressors. It’s been a traumatic year. The only thing that can happen which is worse is that the court does grant an eviction order and I become homeless. (I couldn’t cope in a hotel or anywhere else where they use fragranced products). And this is winter. So I’m praying that 2022 will be better. That people recognise my honesty, decency and disability. That they let me live.

Epilogue February 2022

I accepted the proposal regarding costs at the end of January. However, I can’t get the money asked for through equity release as long as I don’t own the house. So I need to find a loan to pay the executor so I can become sole owner and only then can I apply for equity release. I was told repeatedly that it could be done without a loan but today, I was told that it can’t. It’s hard to get equity release for the amount asked and an expert found only one potential company who would offer me the funds. Just one. not surprisingly, no one was willing to give me a loan. It was something I tried a few months ago. If I pay from my savings, I lose my cash ISA and its tax wrapper, thus adding to my costs. That means I won’t have enough left to pay for my own care for more than a few months. Perhaps a year.

I’m still learning more about human behaviour. For example, everything I’ve been through is consistent with a number of interesting strategies employed by certain people engaged in hurting others. Thus I was the victim of a ‘smear campaign’ (leading to a safeguarding enquiry based entirely on lies), using ‘flying monkeys’, ie carers Mel and Rebekkah, social workers, and the odd nurse, all to give the impression to the GP that he is right (‘look, others saw/heard the same thing’) and I’m not be believed. The phenomenon is called ‘triangulation’. It’s not something I’ve read about in the BMJ.

Although I didn’t know the terms like smear campaign and flying monkeys at the time, I wrote him an email a few years ago recognising how he badly he was treated as a child and that I understood his negative feelings towards me. If he can’t punish the abuser, there were two vulnerable, weedy females who would do. He clearly rejected my empathy and continued to engage what would eventually lead to a dreadful end for his mum (about whom he said, he acted solely ‘out of concern’) and the splitting up of the rest of his family in the UK. He had his ‘supply’ ie his wife and daughters. And he had his fun. Or did he? The abused becomes an abuser. I always thought him so intelligent, why did he fall into that trap?

I understand the smear campaign. He must have been very hurt to lash out to the degree he did. But the solution to abuse/punish/torment the innocent, and mum and I were victims of abuse too, is not to engage in the same behaviour. I got therapy. He obviously didn’t. However, there is a positive: in this area, social services and GPs will never again trigger safeguarding investigations on the basis of the words/hearsay of a sibling against another sibling. Result.

Anyone who would like to loan me a lot of money? At almost no interest?