Hello

Daisyray

Hi my name is daisy Ray. Its taken many months for me to have the confidence to ask for help and advice about my son who has quadriplegic  cerebral palsy, epilepsy and learning difficulties due to catastrophic negligence at his birth 38 years ago. I have been his main carer for most of his life until a few years ago I was diagnosed with mild early on set Parkinson’s disease.  With help from my medication I'm still able to do everything but need some help caring for my son. Due to marital problems my son was taken from his home and family by social services and put into care. That was 3 years ago and he has suffered profound neglect and abuse in the first and second care establishment. He was admitted to hospital 5 times, totalling 125 days. On the last admission he had severe malnutrition, dehydration, kidney failure, oral thrush, aspiration pneumonia.  He's always enjoyed his food and ate and drank very well albeit his food was mashed down so it was easier for him, his swallow was good and still is, but  last year he had a feed peg fitted into his tummy mainly due to  incompetent care staff  not able to feed him without chokingNow in his 3rd home, a supported living bungalow with 3 other clients and care staff life is a little better but it's not the life and care he's been used to. It absolutely destroyed me and caused me to have a breakdown, which I have now made a full recovery. I have not stopped fighting to get my son home, he's not happy in care and the Psychologist who assessed his mental health said that if he was physically able then she feared he would end his own life.  Apart from his obvious physical disabilities his actual health has been extremely good while living at home. He could fight off a cold within 48 hours, his epilepsy was well controlled with medication and a trusted neurologist, he maintained a good spine due to wearing a small spinal body jacket and with regular physio and hydrotherapy which was beneficial to his high muscle tone. Everything that's kept him in good health and wellbeing has been taken away and his overall decline is now very obvious. Lastly my son has got capacity to make  everyday choices in his life, he communicates with bliss and introtalker but for the past 3 years my pleas for him to communicate have been ignored ??? I have endless proof of his ability to communicate, I have contacted human rights, court of protection, office of the public gaurdian, speech therapists and many solicitors and the law society but all with negative response !!!!!!
 

Jo_2022

Hi @Daisyray! 😊 A warm welcome to you on the Scope online community. 

I am so sorry to hear about your situation and all the issues your son is having. It sounds like you and your son are going through a very difficult time. My heart goes out to you and your son; bless him.

Perhaps seeking legal advice from a lawyer with knowledge about disabilities might be a good idea?

I hope your poor son does return back home with you. Look after yourself 💜 

Cher_Alumni

Hello @Daisyray and a warm welcome to our online community. Thank you for making that first post, I know how difficult it can be to share your story and press the 'post comment' button but in doing so you allow us and others to support you the very best we can.

@Richard_Scope has already been mentioned and I'll ensure to notify him of your post, so he can respond to you when he is next on the community. However in the meantime I'm going to email you directly so please keep an eye on your inbox.

I hope you are keeping well. Take care and speak soon.

Richard_Scope

Hi @Daisyray
Welcome to the community and thank you for your brave and honest post. 

In these complicated situations, I have dealt with many, where the family members are ignored and worse and the needs and opinions of the person in the care environment are not even considered.

I would strongly suggest that you make contact with the Police and raise a safeguarding issue against the provider for institutional abuse and neglect. You must be able to evidence all of the allegations.

Please keep me updated. 

Daisyray

Hi, please excuse if I am  commenting in wrong box, this is all very new to me. Regarding contacting the police, they are  very aware of  my situation with my son. During the past 3 years of  living in care he's been supposedly safe guarded 4 times not to return back to the 1st care home . These safe guards were made by a consultant at Lincoln county hospital in the A&E  dept, then 2 ambulance crews and another consultant at scunthorpe general A&E, but at each discharge meeting it was agreed by the professionals attending that my son was sent back to care home. Just before his last admission to hospital on a Sunday morning, my daughter phoned the care home to see how her brother was, she was told that for the past 7 days he  had no food or fluids and they were going to leave it for another 48 hours to contact doctor. My daughter was extremely distressed at this and couldn't believe the lengths of time he had been in this situation and that there were 4 registered nurses in the care home. I contacted out of hours social services emergency team, they advised me to go to my son and call for ambulance.  The care home was an hour and 15 mins away and when I finally arrived there I was refused entry and they called the local police. To say I was upset and worried would be an understatement , I knew my son was very unwell and needed urgent medical attention.  When the police arrived I explained the situation but they refused to let me see my son, instead one of the officers went into home and after 10 mins he came out and said he went to sons room and he looked perfectly OK, smiling and happy, I didn't believe him but he then said I had to leave or be arrested for breech of peace. The next day son was taken to A& E in a very serious health condition. When I was eventually allowed to see him I could not believe the sight before me. He had been dumped on a hard trolly with no sufficient safety sides and being unable to sit unaided he had fallen to one side and a metal bar was pushing into his neck making it difficult for him to breath. I pulled him up and made him comfortable and was shocked at how light he was. The consultant said he had malnutrition and he weighed only 5 stone, he was 9 and half stone when he was taken into care, he had kidney failure, dehydration and alot more, I was totally destroyed at my sons condition and that he had been left there with no carer, no communication system and no one would understand him. Theres so much more he's gone through and I can only stand on the side lines and continue to try and help him. He's a strong determined young man who was always happy and had a wicked sense of humour.  I miss my son beyond words can say and I am determined to get him home with a full care package. I may not be the mum he once had before my parkinsons disease came along but I know what's in his best interests and I am still physically and mentally able to oversee carers and make sure he's safe and happy. I am desperately in need of help with this before it's too late. Thankyou again for your concern and time. I have plenty of evidence on this situation. 

Richard_Scope

Hi @Daisyray
Thanks for your reply. This is awful for your son and your entire family.

The way forward with this is to report the institutional abuse to the Police again and raise a safeguarding concern against the local authority. 

Does your son have a social worker?

Daisyray

My sons first social worker has retired and her manager took over but she has been unavailable since August due to health reasons. The contact I was advised to speak with instead apparently is unable to help also. Social services are very aware of the abuse and neglect my son has gone through and they are not happy with me being a constant  reminder of their total disregard of all his suffering, I was told that I am a thorn in their side. As I said in previous post, the police have been very unhelpful indeed and have suggested that it's in my sons best interests to remain in care ????

Richard_Scope

You really need to raise a safeguarding concern against the local authority. What area of the UK are you in?

Daisyray

I'm in lincolnshire East lyndsey council

Richard_Scope

Here is an advocacy service that might be able to give you more direct help with the situation. 

Voiceability can also provide legal representation, which is what you'll need. Keep records of everything.

Daisyray

Thank you for this information.  My son has an advocate from the court of protection Christine.  She agreed to keep him in care. She also is aware of the situation and what's happened to him. 

L_Volunteer

You are welcome @Daisyray. It is the very least you deserve. 

It sounds positive that your son has an advocate from the court of protection, she agreed to keep him in care and she is aware of the situation and what's happened to him.

How are you feeling about everything at the moment? Please don't hesitate to let us know if there's anything else we can do to support you.

We are all here for you and listening to you. Take care for now and we will look forward to, hopefully, hearing from you again soon