Right Or Wrong?

[Allie No Dots]

What do you make of this?

 

http://news.bbc.co.uk/1/hi/health/7032736.stm

 

Mother seeks girl's hysterectomy

 

Katie Thorpe's mother Alison wants her to avoid suffering

The mother of a severely disabled teenager has asked doctors to give her daughter a hysterectomy to stop her from starting menstruation.

Alison Thorpe, 45, from Essex, says 15-year-old Katie, who has cerebral palsy, would be confused by periods and they would cause her indignity.

 

Doctors are now seeking legal approval before carrying out the surgery.

 

The disabled charity Scope said the operation would set a "disturbing" precedent for other disabled girls.

 

If approved, it will be the first time in the UK a hysterectomy is carried out without it being medically needed.

 

Best possible life

 

Katie's mother said the operation would stop her daughter from going through unnecessary suffering.

 

Mrs Thorpe said: "All we are trying to do is keep and improve Katie's quality of life.

 

"By stopping menstruation it's allowing Katie to enjoy life to the full without the problems of menstruation...the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment."

 

Mrs Thorpe said her daughter would not be able to ask for help or even let people know what she was feeling.

 

It's not about us, it's about Katie

 

Alison Thorpe

 

She said the decision had not been made lightly, but was something she had thought through for many years and finally decided upon when Katie turned 13.

 

According to the Sunday Times, Phil Robarts, a consultant gynaecologist at Mrs Thorpe's local hospital, supports her decision.

 

Mrs Thorpe said: "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult.

 

"I absolutely understand that it's not for everyone, and I'm not saying it should be either.

 

"I'm not advocating this should be a blanket policy for all disabled children, absolute horror at that."

 

But she said she was "utterly" convinced it was the right decision for her daughter.

 

"It's not about us, it's about Katie," she said.

 

'Disturbing' consequences

 

The disabled charity Scope reacted with alarm to the news, which echoes the case of Ashley X, a nine-year-old American girl with the mental age of a three-month-old baby.

 

The charity's executive director, Andy Rickell, said the operation could have "disturbing" implications for other disabled children, and may not even be in the best interests of Katie.

 

We want to see a clear framework put in place for dealing with ethical decisions of this complexity

 

Andy Rickell, Scope

 

He said he acknowledged that Katie and her mother faced a difficult and sensitive situation, and that he recognised the challenges faced by families with disabled children.

 

But he said there were deep ethical problems with carrying out unnecessary surgery on people who are unable to give consent.

 

He said: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.

 

"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.

 

"Scope is concerned that doctors are supporting parents in this case. If this enforced sterilisation is approved it will have disturbing implications for young disabled girls across Britain."

 

'Totally unacceptable'

 

He said that it was for society to adapt to the needs of disabled people, not the other way round.

 

Mr Rickell said the government should do more to help people who care for severely disabled people, and to put in place extra legal safeguards to protect the rights of disabled people themselves.

 

He said: "We want to see a clear framework put in place for dealing with ethical decisions of this complexity, which places the rights, and best interests, of disabled children at the heart of any decision."

 

Simone Aspis, of the UK's Disabled People's Council, said the case was about Katie's human rights.

 

She said: "It is very clear to us that no operation should be undertaken if there is absolutely no clinical benefit to the person concerned.

 

"The operation should not be carried out under these circumstances. We are very aware there are other methods of medical intervention that can be done to help control Katie's pain.

 

"There's lots of non-disabled women who also experience discomfort in their periods.

 

Doctors wouldn't even anticipate in recommending to a parent that their child should have their womb removed. Why should it be the case for this person simply because she is disabled?

 

"As far as we're concerned that is totally and utterly unacceptable."

 

Just saw this and not sure what i make of it tbh . Dont know much about cerebal palsy but got me thinking of a little boy i know who has several difficulties including severe austism. Now had he been female I have no doubt that having periods would likely cause huge mental distress as he (she!) simply would not understand and be terrified.

 

anyway, just thought it was very interesting thing....

[EGAR]

There was a similar case in the States a while back. I am still torn...

[Ian]

Whether it was Ashley x referred to in here I don't remember but I watched on tv a mother & father fight this out through the courts.If I remember rightly mother wanted her daughter sterilised, father who didn't live with them opposed it. The girl had found herself a boyfriend - also disabled & the mother won the cae I think.

 

Personally I wan't convinced the mother was thinking about her daughter so much as her own prejudices & I didn't think it was right to enforce it on the poor girl.

[Xandra]

A difficult one, in some cases it would probably be in the best interest of the child, but in most cases I don't think it would be. It depends a lot on how bad her CP is. And how much do we actually know about what they understand, even if they can't communicate it?

Christy Brown's book My Left Foot, gives you quite an inside in to what it is like to be trapped in body that you can't control, he was probably very lucky to be in that particular family!

[phoebejo]

I don't think there can be any blanket rules in this situation and I'm glad every case is treated individually. On the surface, given the mental and physical problems Katie has then I'd side with her parents and say that surgery would be beneficial in the long term for Katie. She's never going to be in a position to have a relationship and children so I can see no reason why she or her carers should have to endure monthly periods for the next 30+ years.

 

I didn't like what the director of Scope had to say on the matter.

He said: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.

 

He said that it was for society to adapt to the needs of disabled people, not the other way round.

 

I'm sorry but he's a man, how does he know what it's like to have periods? How can he say that to not have to endure them isn't in Katies best interests? Wouldn't periods be more painful and traumatic every single month than a one off operation? Her situation, which really only concerns her and those caring for her, has nothing at all to do with societies attitudes to the needs of disabled people. How can society as a whole adapt to the needs of Katie? It cannot, it's down to those who care for her.

[Red Rotties]

Some people can have very mild C.P. others very servere. Each case must be treated individually. If this young lady cant do anything herself can you imagine having to keep her clean at this time never mind the other issues.

[jackin]

I know that when patricia has a period its a nightmare and very unpleasent for the whole family at times.we have a pattern and mostly we can stick to it but if it is changed in anyway she struggles to cope.

Patricia,t birth mum who is the same as patricia has had six children and all six have been taken into care four after abuse and two at birth plus she is still only in thirties and can have more children.All but two of the children have some degree of learning difficulties.But has a solicitor who says its her and her husband also with learning difficulties right to have a normal life.Yes think its great they are happy and get a lot of help BUT

What about the children,s human right to have a normal life with family?If you knew what my four kids had suffered because someone in social services just plain did not see beyond polical politness

 

Patricia could never care for a child and knows this she forgets things if not told constandly and has poor co-ordination.Fantastic kid but will need care all her life .

Until had these kids would have say it was wrong now changed my mind .

[collies r best]

I don't think there can be any blanket rules in this situation and I'm glad every case is treated individually. On the surface, given the mental and physical problems Katie has then I'd side with her parents and say that surgery would be beneficial in the long term for Katie. She's never going to be in a position to have a relationship and children so I can see no reason why she or her carers should have to endure monthly periods for the next 30+ years.

 

I didn't like what the director of Scope had to say on the matter.

I'm sorry but he's a man, how does he know what it's like to have periods? How can he say that to not have to endure them isn't in Katies best interests? Wouldn't periods be more painful and traumatic every single month than a one off operation? Her situation, which really only concerns her and those caring for her, has nothing at all to do with societies attitudes to the needs of disabled people. How can society as a whole adapt to the needs of Katie? It cannot, it's down to those who care for her.

 

This sums up exactly what i feel [and is much better written than the waffle i would have spouted to say the same! ]

[Annie]

Simone Aspis, of the UK's Disabled People's Council, said the case was about Katie's human rights.

 

The right to have periods that may well be very painful for the next goodness knows how many years? the right to have to be cleaned up more times a day than usual with all the indignity that entails

 

"The operation should not be carried out under these circumstances. We are very aware there are other methods of medical intervention that can be done to help control Katie's pain.

 

I think he's missed the point in that it's not just the pain that is the problem and Katie is probably taking many other medications already so why make her take more. Taking medication itself can be stressful and difficult with a disabled child anyway.

[cycas]

If she's not able to consent to the operation, presumably she is also not able to request it.

 

Although I think it's a good thing this sort of op is not performed routinely and does provoke debate, I feel the decision should lie with the people who are closest to the person involved, if the child herself is not able, and will never be able, to make the decision herself.

[Fee]

I don't think there can be any blanket rules in this situation and I'm glad every case is treated individually. On the surface, given the mental and physical problems Katie has then I'd side with her parents and say that surgery would be beneficial in the long term for Katie. She's never going to be in a position to have a relationship and children so I can see no reason why she or her carers should have to endure monthly periods for the next 30+ years.

 

I didn't like what the director of Scope had to say on the matter.

 

 

I'm sorry but he's a man, how does he know what it's like to have periods? How can he say that to not have to endure them isn't in Katies best interests? Wouldn't periods be more painful and traumatic every single month than a one off operation? Her situation, which really only concerns her and those caring for her, has nothing at all to do with societies attitudes to the needs of disabled people. How can society as a whole adapt to the needs of Katie? It cannot, it's down to those who care for her.

 

 

Absolutely agree, and couldn't have put it any better.

 

I worked many years ago in a respite home for young people with severe learning and/or physical disabilities. I remember in particular a teenage girl with severe autism who was completely terrified by the sight of blood. Her periods were a nightmare for her and all who cared for her, she would scream and become completely hysterical at the sight of her own menstrual blood.

 

I don't think a hysterectomy was ever considered or discussed, but with hindsight I can only think it would have been a better option than putting her through that distress and terror every month.

[BeadyP]

just as a devils advocate.Arent there types of injectiony type contraceptions that stop periods?

Would that be acceptable?

The only thing I'm thinking, and I am not medically minded in any way,but isnt there a problem about having early menopauses etc?

[Red Rotties]

Just listened to her Mum on Jeremy Vine. She is a loving mother who wants to do her best by her daughter. This is a daughter that cant do anything for herself, she is even fed by tube. I sometimes wish the do gooders would go away. As a mum of a wheelchair bound child I know what its like to be on call 24/7 with no help, let the do gooders spend a month caring for her daughter and then maybe just maybe they will understand, this job aint easy and there are constant worries about what the future holds

[phoebejo]

and there are constant worries about what the future holds

Exactly. Who will care for Katie in the future? Sad as it is, her parents are not always going to be there for her, and there is a good chance she may out live them. And also, although it's not a pleasant thought, but Katie is very vulnerable and there have been cases of women like her being abused in care and ending up pregnant. Heaven forbid that happen but it's a possibility.

[snow]

just as a devils advocate.Arent there types of injectiony type contraceptions that stop periods?

Would that be acceptable?

The only thing I'm thinking, and I am not medically minded in any way,but isnt there a problem about having early menopauses etc?

 

The mother explained that because of the severity of her daughters condition shes not really mobile and thus the inplants and injections etc which can prevent periods are not an option because of the massive risk of thrombosis.