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Oliver’s story


primrose

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13 minutes ago, Miracle said:

I have received a email from the government this morning regarding the petition. So pleased they have discussed it.x

I am very disappointed in this response. It doesn’t mention mandatory training at all. We already have plenty of guidelines in place. Guidelines are often ignored. Mencap are heavily supporting Oliver’s petition. 

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7 minutes ago, Fiz said:

Yes, I did too, Miracle. It looked as if they weren’t unsympathetic either so hopefully the petition will change the slipshod way some medical staff behave.

Thankyou Fiz. Sadly it’s a lot of fluff and waffle with no mention of mandatory training. Guidelines are often ignored as they are not mandatory. 

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Yes I had it too ....there was something about signatures reaching 100.000 ....is that the point it has to be debated in Parliament? 

 

A close friend of mines daughter qualified last year( she is older though at 30) with a degree in Nursing for Special Needs and has started her first job in the Birmingham area.

ive alerted her to this petition because perhaps it could be people like her who could deliver training more generally. Of course I'm not sure just how specialised her training is but there do seem to be some nurses out there with knowledge of Autism etc. 

As her mum worked with special needs children all her life including respite care at her home etc she will have grown up with a very good understanding I think so probably why she has been attracted to this route in nursing.

Im mentioning this because she will not be the only one who has this training so some knowledge is out there in the Profession but obviously needs more general sharing.

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2 hours ago, LinMM said:

Yes I had it too ....there was something about signatures reaching 100.000 ....is that the point it has to be debated in Parliament? 

 

A close friend of mines daughter qualified last year( she is older though at 30) with a degree in Nursing for Special Needs and has started her first job in the Birmingham area.

ive alerted her to this petition because perhaps it could be people like her who could deliver training more generally. Of course I'm not sure just how specialised her training is but there do seem to be some nurses out there with knowledge of Autism etc. 

As her mum worked with special needs children all her life including respite care at her home etc she will have grown up with a very good understanding I think so probably why she has been attracted to this route in nursing.

Im mentioning this because she will not be the only one who has this training so some knowledge is out there in the Profession but obviously needs more general sharing.

Thankyou, there are a lot of amazing LD nurses out there but I found their advice from consultant doctors was ignored. It’s these people who need this mandatory training. I would like to see it starting in medical school 

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I’m fairly new to this forum  and have read your heartbreaking story and signed the petition. Hard to believe that while most of us were troubled about the mundane stuff surrounding dance training, you were going through this terrible trauma.

My advice would be to write to members of the House of Lords. I’m thinking particularly about Lord Saatchi as a starter. He managed to change the laws regarding medical research of cancer after his wife died of breast cancer, he felt, unnecessarily. He put up a huge fight against fierce opposition but was successful in the end. Like you. he was determined that his wife’s death should not be in vain. He had his story in all the major newspapers - Times, Telegraph etc. Easy for him, I guess, when he’s surrounded by people in publicity. But if you can find someone who has similar passion and determination for change to take on your story and support you then I’m sure you will be successful. Happy to write too if you need additional back up.

Good Luck.

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I had also been off line for a few weeks, this morning I sat down and read this shocking story with mounting fury, disbelief and outrage. To think that someone's precious child could be subjected to such cruel and inappropriate treatment at the hands of people who are meant to care for their patients. It beggars belief. Unfortunately a widespread lack of understanding about neurodiversity (autistic spectrum individuals) combined with outdated attitudes towards prescribing treatments by doctors seemed to collide here in a horrific way.

 

Doctors are able to give whatever medicines they consider appropriate  - so called 'off label usage,' on the basis of their clinical expertise.

 

In this case they seemed to have completely ignored the drug manufacturers warnings.

 

The professional usage information (so called SmPC) for Olanzapine is readily available in the public domain. It is a powerful antipsychotic drug intended for use in patients with severe schizophrenia and should not be given to children and adolescents under the age of 18 years due to a lack of safety and efficacy data.The drug has not been trialled in children and young people and there is not enough evidence to show that it works for them. It also states that 'Olanzapine should be used cautiously in patients with a history of seizure'.

 

Unfortunately doctors are not always held accountable even when it is clear - very clear in this case - that a clinically inappropriate decision was made. Some of them also feel entitled to make these decisions without consulting either the patient or the patients family. I am sorrier than I can ever express in words that this should have happened to your son Primrose. Most of us who work in the healthcare sector really do want to do our best to help others.

 

The guidelines on medical prescribing need a rigorous overhaul, and they need to become rules, with teeth. There needs to be much more openness and transparency in how treatments are selected, particularly in the seriously ill and the vulnerable. The system is intrinsically resistant to change, but there have been some encouraging signs recently, such as the parents who have successfully fought to get cannabis oil prescribed for their very sick children.

 

Publicity is the key, House of Lords, TV, whatever keeps it in the news.

 

Stay strong Primrose and wishing you ultimate success.

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On 27/07/2018 at 18:39, valentina said:

I’m fairly new to this forum  and have read your heartbreaking story and signed the petition. Hard to believe that while most of us were troubled about the mundane stuff surrounding dance training, you were going through this terrible trauma.

My advice would be to write to members of the House of Lords. I’m thinking particularly about Lord Saatchi as a starter. He managed to change the laws regarding medical research of cancer after his wife died of breast cancer, he felt, unnecessarily. He put up a huge fight against fierce opposition but was successful in the end. Like you. he was determined that his wife’s death should not be in vain. He had his story in all the major newspapers - Times, Telegraph etc. Easy for him, I guess, when he’s surrounded by people in publicity. But if you can find someone who has similar passion and determination for change to take on your story and support you then I’m sure you will be successful. Happy to write too if you need additional back up.

Good Luck.

Thankyou for your support. I have written to a few MPs but sadly no response. I am doing a lot of work with Mencap and NHS England so that’s a positive x This is what happened to Oliver https://www.google.co.uk/amp/s/www.bristolpost.co.uk/news/bristol-news/full-story-day-oliver-mcgowan-1474471.amp

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I just wanted to let you all know that I have been invited to the Houses of Parliament in September to meet with Caroline Dinenage the health and social care minister. We have also been asked to write a piece for a medical journal. Oliver’s voice is being heard

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On 22/07/2018 at 19:44, Tatasmum said:

I have shared the petition again on my own Facebook page. I know sometimes posts aren't seen but the minute I share a family photo everyone can see it. I am disappointed by the response of my own friends. 

Thankyou so much for your support x

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On 23/07/2018 at 01:10, Jan McNulty said:

Link to the Facebook page:

 

https://www.facebook.com/paulamc007/

 

Link to the petition:

 

https://petition.parliament.uk/petitions/221033

 

IIRC when you have signed and verified your signature on the petition you are given an option to share to Facebook, twitter or by email. 

Janet Thankyou so much for your support and kindness. We really should meet one day x

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I know you have appeared on the tv regarding Oliver but perhaps Woman's Hour on Radio 4 would be another place to talk about your situation. I don't listen to it every day but sometimes have been moved to tears by some people's stories on there and it does have a regular following. 

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2 hours ago, primrose said:

I just wanted to let you all know that I have been invited to the Houses of Parliament in September to meet with Caroline Dinenage the health and social care minister. We have also been asked to write a piece for a medical journal. Oliver’s voice is being heard

That's terrific progress. Oliver's voice is indeed being  heard and in all the right places.

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