support deserately needed!!!

I have a ten year son who suffers with brittle asthma, and life threatening allergies. He has been home schooled following a hospital admission in february, as hes been too unwell to return since and has received home schooling from our local hospital. Reon has exhausted all convential treatment for hes asthma and has been steroid dependant since last july, he is suffering tremendously and we are desperate to move forward with hes treatment, however our current housing situation is stopping it . Doctors at the Royal Brompton,chelsea, want to start reon on a course of methotrexate but are very reluctant todo so as he is currently having to share a room with hes two brothers, and already has a lowered immune due to prolonged steriod use, and becomes very unwell when he catches a simple cold. We are running out of options as reon tryed xolair, which is working really well for hes younger brother, how ever he had a really severe allergic reaction to it. I have set up a facebook page 'help reon move...forward'...., i would really appreciate any support you could offer by joining are group and leaving your comments, or sharing any similar experiences. I am putting a petition forward to islington councils medical officer, who fails to take asthma serious and give my son maximum medical points, when my current housing situation is having a huge effect on hes health. Their medical officer refers to asthma as something which can be treated by ""a pump"", its pure and utter ignorance on their behalf. I need to try and raise awareness of just how severe asthma is, and how it effects peoples lives everyday.

13 Replies

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  • just to say welcome to AUK.

    Carnt give you any info im afraid as on inhalers and tablets.

    some more knowladeaible than me will come along xxxxx

  • Reon is in my daughter's class at school. The family are having a terrible time with their local housing department due to ignorance about asthma. The properties are there and available, but they just don't have enough points to secure the type of accomodation they require. The council can't understand why the mum is stating she needs a ground floor entrance and a property close to the school. They think she is being 'picky' and using the boy's asthma as an excuse to gain a better property. She has been told she could move if she wanted too but is choosing to go after ground floor flats in a particular area, which is limiting her!

    If you could PLEASE write a message on their facebook page about how asthma affects peoples lives it will go a long way to helping her cause.

    Come on guys, show some support. x

  • Surely a letter from the top consultant would carry a lot of weight with the Housing Dept? Has he written? Have you contacted your MP? they can be very helpful. Good luck xx

    Edit. Whoops - just read on your other post on General Forum that the consultant HAS written. Surely that should be enough for the Housing Dept.....

  • Thanks for the messages - Reons consultant has written several times to the housing department explaining the severity of not only his but also his brothers asthma. They have stated both boys require their own bedrooms and the medical reasons behind this. It has been explained why Reon needs to try a steroid sparing agent and the damage caused by long term daily prednisolone use.

    The council have only made us eligable for a 3 bedroom property based on over crowding issues, despite being urged to award us a 4 bedroom on medical need. The Royal Brompton actually phoned the medical officer for the council and explained the situation and asked if they had any questions. Still, despite all this we are not getting very far! Medical points range from 20, 50 and 100. Reon has only been awarded 50 points, which both myself and his medical team feel is unjustified.

    There is a new development close to my boys school which has both 3 and 4 bedroom properties available. However, without more points we are unlikely to win the bid for any of the ground floor flats. I will be ringing them everyday next week to try to get my case across. Unfortunately, asthma is seen as an 'everyday' condition that affects most people and is traeted with a few puffs of ventolin. They just don't understand how bad it can be.

  • Hi Reon

    All I can say is please keep fighting. Usually the one who makes the most noise and fuss is the one who gets the help they actual deserve. I have had to do this on numerous occassions! I am Brittle Asthma myself and am going through a rough patch too. I have been told to stay at home as much as possible and self manage myself. As you will understand this is particularly frightening and it is all because government do not pay for people who get re admitted within a month and because there is bed and staff shortage.

    Keep fighting and I am sure you will win your case! Have you taken it to the media? That is sometimes i great way! Also try emailing some of the big people in asthma uk they may have other ideas.

    Feel free to pm me for ideas on getting your voice heard!

    Plumie

  • Hi Reon

    All I can say is please keep fighting. Usually the one who makes the most noise and fuss is the one who gets the help they actual deserve. I have had to do this on numerous occassions! I am Brittle Asthma myself and am going through a rough patch too. I have been told to stay at home as much as possible and self manage myself. As you will understand this is particularly frightening and it is all because government do not pay for people who get re admitted within a month and because there is bed and staff shortage.

    Keep fighting and I am sure you will win your case! Have you taken it to the media? That is sometimes i great way! Also try emailing some of the big people in asthma uk they may have other ideas.

    Feel free to pm me for ideas on getting your voice heard!

    Plumie

  • I have joined the facebook page in your support- i really feel for you and your family -being a mum who has brittle asthma and an asthmatic child i know how important suitable housing is.

    I frustrates me so much that the public can be so ignorant and presume that all asthma canbe sorted with a pump -something i have come across amny times.

    You are very much in my thoughts and prayers

  • Koolkat has already told us about you, joined your facebook page on the weekend. Personally found when I also had to move because of my brittle asthma my local council were also totally non supportive. Found the only way was to make yourself as annoying as possible, my MP and local labour councillor were great but it did take time. Wishing you the best of luck!

    Katina

  • Another thought - have you lobbied your local councillor? If you have a copy of Consultant's letter, send it to your own councillor, and head of housing committee. I think it's a case of really making a nuisance of yourself to these people. Good luck.

  • Our story has been published in the Evening Standard today. You can view it on line at:-

    thisislondon.co.uk/standard...

    There is a comments section, if you feel strongly please leave a comment for all to read!

    Thanks again for all the support you have shown, it means so much. X

  • Hello!

    I used to work for a council and they didn't take my asthma seriously - I was basically forced out of my job after a very unpleasant 18 months of bullying to try and get 'reasonable adjustments; put in place to help me.

    When I started there it was well controlled, but was stuck in a small airless warm room with 4 others - and lots of colds - so I don't need to tell you what happened to me!! The increased steroid use probably made me more susceptible to picking even more viruses and then chest infections and I started getting allergic to more things, got precribed Claryithromicyn (taken before without problem) for a chest infection (picked up from work again) Jun '09 and had full blown anaphylactic shock/severe asthma and was lucky to make it out of resuss.

    Even then they didn't take my condition seriously, the Equalities and Access Manager advised I work in another room if someone was ill (my computer was very easy to move) and then my Asthma Specialist said she wanted me to work in another room without laser printer as this may be contributing but I met every excuse as to why this was not possible.

    I was called 'oversensitive', asked if my condition was 'proven and not just panic attacks' (after being in resuss) and blamed for catching viruses as I 'wasn't wiping door handles with hygiene wipes', even though we had a repeat sneeze offender that didn't use tissues and wiped their nose on their sleeve!!! Yuk!!!

    I am not surprised you are having this problem, my condition is now classed as brittle asthma and particularly dangerous with severe allergic reactions, trying to get this through to them was like talking to a brick wall.

    All the best for your son's treatment, with asthma there is always the hope with the right treatment it can improve!

  • MY SON'S ASTHMA ATTACKS..BROUGHT ON BY MY COUNCIL FLAT!!

    Hi, I have a three year old son who has frequent and severe asthma attacks which are brought on by my council flat.

    We moved in 2 years ago and very quickly we had damp which the council decided was condensation as, obviously being winter, I was having to dry clothes indoors. Their diagnosis was wrong as there was water rising up the wall from the ground along an exterior wall in both of the bedrooms- and nothing was ever dried in my son's room.

    Consequently, the council decided that they would 'cover it up' with polystyrene backed plaster board, but it took them 6 months to do so. In the mean time alot of items in both bedrooms got damp and grew mould, which the council refused to replace because apparently it was my fault even though I had all bedroom windows open, heating on and ran a dehumidifier 24/7 like they advised.

    During this time I noticed my son becoming ill with frequent colds and getting breathless easily. In December 2009 my son had to be rushed to hospital as he was lathargic, wheezy, gasping for breath and his eyes were rolling back and lips turnuing blue. This is when he was diagnosed with asthma and after lots of steroids, nebulisers and many hours he was able to come home. Since then he has been rushed to hospital two more times and each attack is getting worse resulting in more time in hospital.

    His medication has now been upped to oral tablets, which don't seem to be making a difference.

    I know it is our flat because when he goes anywhere else he is fine so recently he has had to live with his Dad while me and my 6 month old live here.

    He came back last weekend but had to be rushed in to horspital on sunday....bit of a coincidence.

    I have been to the council with letters from my MP, doctors, health visitors etc. saying that it must be mould spores because all other allergy tests came back negative. But becase the surveyor from the council and damp tested polystyrene that does not absorb water said it was not damp I do not have a case so I am in band 4.

    The council could not care less about the severity of this disease and do not understand my son could die if he was here with me, why should I not be able to live with my son? and when he does come back I should not be having to watch him constantly in case I miss another attack when I know that if we moved he would not be having these attacks.

  • MY SON'S ASTHMA ATTACKS..BROUGHT ON BY MY COUNCIL FLAT!!

    Hi, I have a three year old son who has frequent and severe asthma attacks which are brought on by my council flat.

    We moved in 2 years ago and very quickly we had damp which the council decided was condensation as, obviously being winter, I was having to dry clothes indoors. Their diagnosis was wrong as there was water rising up the wall from the ground along an exterior wall in both of the bedrooms- and nothing was ever dried in my son's room.

    Consequently, the council decided that they would 'cover it up' with polystyrene backed plaster board, but it took them 6 months to do so. In the mean time alot of items in both bedrooms got damp and grew mould, which the council refused to replace because apparently it was my fault even though I had all bedroom windows open, heating on and ran a dehumidifier 24/7 like they advised.

    During this time I noticed my son becoming ill with frequent colds and getting breathless easily. In December 2009 my son had to be rushed to hospital as he was lathargic, wheezy, gasping for breath and his eyes were rolling back and lips turnuing blue. This is when he was diagnosed with asthma and after lots of steroids, nebulisers and many hours he was able to come home. Since then he has been rushed to hospital two more times and each attack is getting worse resulting in more time in hospital.

    His medication has now been upped to oral tablets, which don't seem to be making a difference.

    I know it is our flat because when he goes anywhere else he is fine so recently he has had to live with his Dad while me and my 6 month old live here.

    He came back last weekend but had to be rushed in to horspital on sunday....bit of a coincidence.

    I have been to the council with letters from my MP, doctors, health visitors etc. saying that it must be mould spores because all other allergy tests came back negative. But becase the surveyor from the council and damp tested polystyrene that does not absorb water said it was not damp I do not have a case so I am in band 4.

    The council could not care less about the severity of this disease and do not understand my son could die if he was here with me, why should I not be able to live with my son? and when he does come back I should not be having to watch him constantly in case I miss another attack when I know that if we moved he would not be having these attacks.

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