Saturday, February 23, 2013

When is it okay for a young adult to be confined to bed?

When they have cerebral palsy and are living in residential care.  Apparently.

When I read that a parent claims that she is being denied proper access to her adult child because she has regularly queried aspects of his care, I was horrified.  Even more so when the care home in question is one that I was going to approach for Smiley's long term needs as I greatly admire the woman to established it.

Children like Smiley are SO vulnerable.  She totally depends on her carers to love her and look after her and give her everything she needs.  As her parent I expect the same from anyone who is minding her on my behalf.  We shouldn't have to complain.  We shouldn't have to question.  How can ANYONE not want the best for our very special children.  They have been dealt a difficult hand, but they deserve a good life, just the same as everyone else.

It looks as though I need to plan to live a very long time.


I never planned to print a press release on my blog, but today I am.  Please read it and do whatever you can to support this mum via the Special Needs Parents Association.

PRESS RELEASE Parent Removed from Laura Lynn Hospice by Gardai after making complaints about care. 

23rd February 2013


Cathy Andrews is undertaking a peaceful protest outside the LauraLynn Hospice (formerly known as the Children’s Sunshine Home) on the Leopardstown Road to highlight what she considers to be an inhumane and cruel set of restrictions imposed by the Director of Nursing, These restrictions prevent Cathy from being with her son Ronan, who is in long-term residence in LauraLynn. All other parents and family members have unrestricted access. 

The LauraLynn Hospice has a high media profile, designed to raise many millions of euro to provide respite care for children with life limiting conditions in a new purpose built unit. What is not generally known is that there is a group of young adults in residence in an older part of the building who have severe and profound levels of disability, some of whom have a short time to live and require skilled care. Cathy’s son Ronan is 25. He has severe cerebral palsy, epilepsy, a profound level of learning disability and a chronic lung condition. He has had a very difficult life and is often seriously ill. Cathy visits him very frequently to help care for him.

However, all is not well in LauraLynn. At times, the organisation has a poor and fractious relationship with some of the parents of long-stay patients. 

As with all facilities providing care for the disabled, the LauraLynn is not as yet open to inspection by HIQA, the independent health monitoring body. As a result, parents and family members have to take personal responsibility for ensuring that their loved one is being cared for in a proper manner. Many parents have found themselves fulfilling this role for many years. On occasion, this has led to conflict with management.

If parents make what the management considers to be too many complaints, or are very dogged and insistent, attempts will be made to silence them. This is often done in a subtle manner. Having driven parents to depths of frustration or despair by failure to respond properly to concerns, it is natural for parents to become angry and/or distressed at times. At this point the management can make an easy case that the parent is frightening or upsetting staff and is a threat to the smooth running of the establishment. The Health and Safety legislation is then used as justification for banning parents from the premises or imposing draconian restrictions on visits to their loved one. This is what has happened to Cathy.

Cathy has been a stalwart disability campaigner, determined to ensure that her son and other residents receive first rate care in Laura Lynn. She has been involved over the years in issues around patient safety, living conditions, hygiene and protection from abuse and has suffered a great deal of frustration in the process. On this occasion, she has been falsely accused of creating difficulties for staff because of her insistence that her son should not be confined to his bed, in isolation, for a large portion of the day. This she saw as a form of abuse. Cathy has done no wrong. The management action has imposed severe and punitive hardship on Cathy, who loves and cares for her son Ronan very much. Ronan has been deprived of his mother’s company, care and support at a time when he badly needs it. He is an innocent victim. This situation is outrageous and intolerable.

Under the management’s edict Cathy may only visit her son for limited hours during the week, and not at all over the weekend. In an attempt to establish her right to have access to her son at all times Cathy refused to leave Laura Lynn last Thursday evening, when her restricted time was up. She was then subjected to the humiliation of being escorted away from her son and off the premises by the Garda - at management insistence. You can call For further information contact Cathy Andrews 087-6616504 or email at cathyandrews21@yahoo.com


UPDATE


The very sad news has been announced that Ronan Andrews died peacefully on October 11th in the loving care of the staff of St Vincent's University Hospital, Dublin.  May he rest in peace.


42 comments:

  1. Oh that is awful, it makes my stomach turn to think how I would feel being denied time with my children at whatever age but especially if they are vulnerable.

    I spent time in residential homes for adults with disabilities during my nurse training and I know there are some special places but one rogue/cruel place is one too many and any treating another human being this way is one too many.

    I hope this gets sorted. x

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  2. I'm utterly appalled, praying that this resolves quickly and with the best result for Cathy and Ronan xx

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  3. This is just awful...and unfortunately not uncommon. Yes, I too think that I need to live a very long life..:(

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    1. It hit me really hard, because it's so close to home :(

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  4. OMG that scares the living daylights out of me. How wrong and unfair that they are both being punished because of the inadequacy of the care he is receiving! It is totally shocking!

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  5. Disgraceful and truly frightening!!!

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  6. Disgusting is all I can say and yes sadly not as uncommon as people think.

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  7. That is something I'm so afraid will happen when I'm gone... it's just not fair...

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  8. Oh, this is just too awful. I am so saddened by this. :(

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  9. And the one who suffers most is Ronen but that doesn't seem to be a consideration as long as the staff are not upset in any way.

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    1. I don't feel I know enough yet, but it certainly does not sound that a situation that I would find acceptable for my daughter

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  10. Disgraceful that a management team put in place to provide a safe secure caring environment would treat any person like this , makes me fearful of the future for my child...

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  11. Im shocked but at the same time not really surprized in this country, you just can't trust anyone anymore

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  12. I'm stunned to read this. What a heart breaking situation for Cathy Andrews. I hope things get sorted very soon.

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  13. please everyone go and walk outside lauralynn in peaceful protest with Cathy she is a lovely woman who desperately needs everyone who is moved by her story to go and give even an hour of your time please please support her and her family

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  14. I am appalled by this. Surprised, yet not.

    I have seen the potential of this in nursing homes for older people too. I haven't found a way to write about it on my blog and not be too revealing yet, so I haven't done so.

    Forget about disability/elderly for a moment. The 'Home' has an ill and perhaps 'difficult' patient to care for. I can (personally) see the need to keep her (my patient) in her room all day most days as she screams indeterminably when moved to the communal room. That is upsetting for other residents & clearly moving her causes extreme distress for her too. So although I don't like it I get it. They bring her out on 'good' days. She is always loosely strapped in her chair. I don't like that either but have, for safety reasons agreed to it.

    I have never been refused admission to this Home nor discouraged from making complaints...in fact I've been encouraged to do so. I was once chastised for being still visiting at 9pm, by a new nurse. That NEVER happened again, once I brought it to the attention of Director of nursing;-)

    Nowhere is perfect when looking for some 'home' to take care of our loved ones and I guess my family is lucky, but we still have to be on our toes.

    I can clearly see the potential for abuse in care homes. I think this particular case is dreadful, unforgivable and definitely needs highlighting. It seems that not being subjected to the same investigations as Nursing Homes has given the LauraLynn House a remit to do what they want. That needs rectifying. Immediately.

    (Sorry, maybe I should have written a blog post after all!)

    xx Jazzy

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    1. Thanks so much for this comment Jazzy, there are things I'd like to write about the home where my mother stayed, but I don't know where to start. I hope you do write that post xx

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    2. This particular situation and the reaction to it has been very badly handled. My son would NOT be alive today if it were not for the incredible care given by Laura Lynn staff. Laura Lynn does not have a remit to do what they want, they abide by hospice rules, and are due to come under the remit of Hiqa very soon. There is a huge amount of opinion being voiced regarding this case, a lot of which is way off the mark, this is extremely upsetting for parents of children in respite/palliative care in Laura Lynn , it has been badly handled, and not just by Laura Lynn, the social media page highlighting this family's plight is not helping any resolution either, the emotions surrounding an issue such as this understandably anger people. And can I clarify one issue, the Children's Sunshine home was re branded recently and is now included under the Laura Lynn "brand", given that Laura Lynn house is Ireland's only hospice for children this really awful episode is quite damaging, it should not undo the amazing work they do.

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    3. ps if you don't approve this comment that's fine, I bet you won't....

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    4. Thank you for your comment, and I've no problem publishing it, in fact it is important to get another angle and I must admit that I hadn't thought about how this situation might be affecting other families that use Laura Lynn. This story really upset me, because it could be my daughter next and that is what I tried to convey in my short commentary to the press release, which I published in good faith as it is from a reputable source.

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    5. Thanks for your response, there's no need to post this, but I'd like to offer you some context. Our son entered Laura Lynn last February, while the Laura Lynn brand only applied to the hospice for very young children. He spent 9 months there full time, he was not expected to live for more than a couple of months at most, but there were so many small wins by the team there that he is now stable. The prognosis is still the same and every day is a bonus. We have a fantastic relationship with everyone there. We now only use LL for respite, and the standard of care remains very high. However, I ought to point out that there are children there who have been taken under the care of the HSE. The parents sometimes cannot cope (which I get!), and sometimes the relationship with LL management can be fractious (I don't have time here to explain). I would not be able to recommend LL if I didn't trust them completely. I understand how a parent can be distressed by a situation such as this, and it is unfortunate. Bias, confusion and a little bit of hysteria has resulted from this awful situation. If you'd like to know more I would be delighted to have a chat. You will see more about our journey on RTE March 25 9.30, when a documentary following 4 families will be broadcast (we are one of those families). If you are terrified that your daughter would not be cared for in the way you want if (hopefully not for a long time if at all) you need a hospice service. The staff there are fabulous, but I can see how management could get it wrong..... Kind Regards, John

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    6. I hope you don't mind that I published this comment, i think it adds to the discussion and is a good reminder of how important the Laura Lynn hospice is to many families x

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  15. I am so saddened by this. You don't want to believe people can be so callous towards caring parents who only want to the best for their children. Saddened and disgusted. I hope Cathy manages to resolve this situation and that the management come to realise that their behaviour is disgraceful and unaceptable.

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    1. I hope it's resolved very soon indeed, it's a horrible situation for any mother and child x

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  16. Awful way to treat a family member. Good job you heard about this before you considered it for Smiley.

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    1. You'd wonder how to be sure that somewhere was any good :(

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  17. That's awful how they can treat someone like that. Glad you found out xx

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    1. I know, and the situation is still not resolved either xx

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  18. UPDATE: On March 21st 2013, all restrictions on Cathy’s access to her son were lifted. Cathy now has the same rights of access to her son as any other parent. This was been confirmed in a letter from LauraLynn management.

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