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My son's battle with severe OCD and lack of treatment

Posted By Lorena

"My son's battle with severe OCD and lack of treatment"

About: Kent and Medway NHS and Social Care Partnership Trust / Adult mental health

(as a parent/guardian),

I can hardy begin to describe the appalling lack of treatment my son has experienced at the hands of the staff of Kings Road Clinic in Herne Bay.  

I am writing this as my son is in the grip of severe OCD which in his words is like 'having your legs encased in a block of cement, wearing a straight jacket and trying to fight your way through quicksand at the same time'.  He has also stated many times that he would rather have a limb amputated in exchange for being free of OCD.

To make this even worse (if it could be!), the staff he has come into contact with at Kings Road Clinic, who are paid to help him, have treated him with utter contempt and have been at the least totally disinterested in his condition and at the worst downright insulting.

About 18 months ago my son requested a referral to the Maudsley Hospital in London, as he had heard it was one of the centres of excellence for the treatment of OCD. During this long period, in the absence of any updates he has made countless calls to the KR clinic to find out what is happening about it but has been repeatedly fobbed off with excuses.  He is still none the wiser as to when or if he is to be referred as he can get no information out of them at all.

During this time he discovered that he had a care Co-ordinator, but this person has made absolutely no contact with him to date.  He recently had an assessment by KR clinic, after constantly harassing them, but to get the results he had to jump through hoops.  The staff he has come into contact with and the whole ethos of this place is a total disgrace. They should be helping people with mental health problems, and in my son's case, severe ones, but nothing has been done.

During the past week or so my son has made at least 10 phone calls and left messages asking for his calls to be returned. But my son is still waiting!  It's about time something was done.  It's nothing short of a scandal.

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Responses

Response from Kent and Medway NHS and Social Care Partnership Trust 7 years ago
Kent and Medway NHS and Social Care Partnership Trust

Submitted on 08/05/2018 at 14:43
Published on nhs.uk at 15:06

Dear Anonymous, We are very sorry to note your concerns about our service’s response to your son which is not what we would like to see.

We are doing some focused work on improving our community services and it would be helpful to better understand your son’s case in order to better support him and to improve services more generally.

If you are willing it would be really helpful if you contacted the service manager responsible for the Canterbury Coastal service.

They can be contacted on 01227 206540.

If you would prefer to speak to someone independent of the service you could call our Patient Advice and Liaison Service (PALS) on 0800 783 9972.

Update posted by Lorena (a parent/guardian)

I don't know who gave this response, but first of all the 01277 number given was the Kings Road Clinic, the very place that has totally let my son down (see my post above). I passed this number on to my son as I thought he would be able to speak to someone at last who may actually make something happen. He recognised the number immediately due to the number of fruitless calls he has made in the past. However, he called them asking for the 'service manager' and was told that she is not based there but at Canterbury?! He then rang the Canterbury office at 4.30pm and 4pm on two occasions requesting to speak to the service manager, and was told that they had gone home, even though they is supposed to be there until 5pm. What a shambles! He rang twice more and was told there was no-one available, but did get a call back eventually at nearly 5pm, and as he was out this person left a message with their name and leaving no other information. They have made no further effort to contact him.

I do not know who composed the above reply to my original post, but I feel that it is total fiction. They didn't even direct us to the right office! And we find it preposterous that they are claiming to have any interest at all in my son, let along wishing to support him.

As I stated originally, my son requested a referral to the Maudsley hospital and has had no feedback at all from the Kings Road Clinic. My son has made in excess of 20 phone calls and left countless messages none of which have been replied to.

What we want is a progress report on his request for a referral to the Maudsley, and also a copy of the results of the assessment questionnaire, it's that simple.

I feel like no-one cares enough, or is interested enough in him to bother to even give him the information, let alone treatment.

Since I contacted you, and persuaded my son to take the matter up, it has caused him a great deal of extra distress which has contributed to a further deterioration in his mental health, so much so that I fear for his safety and state of mind.

At the same time the worry and stress on myself has caused me to develop a stress related illness.

Response from Fiona Morrissey, Patient Experience advisor, KMPT 7 years ago
Fiona Morrissey
Patient Experience advisor,
KMPT

Submitted on 18/05/2018 at 15:24
Published on Care Opinion at 16:27

picture of Fiona Morrissey

Dear Lorena, We are very sorry to hear your experiences and their impact on you both.

We advise that you call Patient Advice and Liaison Service (PALS) on 0800 783 9972, this needs to be before 5pm today. They are open 9am until 5pm Monday to Friday.

Please mention that you have been directed to them via the Care Opinion web site.

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Lorena (a parent/guardian)

As I wasn't advised that my update had been published, I have only just seen the above response and it is Saturday afternoon 6pm. I will call them Monday.

Update posted by Lorena (a parent/guardian)

From Lorena: This is the latest update on the sequence of events since I published my story.

Contacted Patient Advice & Liaison Service straight away and spoke to Jo who was extremely helpful. At the same time a Care Co-ordinator contacted my son. However he had to wait several weeks before he was able to see him as the care coordinator could not deal with the problem by telephone. In the meanwhile my son spoke to PALS and gave them a lot more information about his issues with Kings Road Clinic, etc and said that he wanted to start a formal complaint procedure against Kent & Medway NHS and Social Care Partnership. He was advised by PALS to hold fire for the moment until he had seen the Care Co-ordinator and so he took their advice. At the appointment with the Care Co-ordinator to his surprise he was told that the staff at Kings Road Clinic still hadn't actioned my son's request for a referral to the Maudsley.

The Care Co-ordinator said he would progress this for him and that he would contact him within 2 weeks with an update. Well my son waited 2 and a half weeks but heard nothing so he 'phoned to be told that his Care Co-ordinator had just gone on holiday for 2 weeks (without contacting my son first as promised). He then spoke to PALS as he was furious and they told him that they couldn't do anything further until the Care Co-ordinator had returned. This has meant a further delay of five weeks, making a total delay of 2 months since I posted this story.

This has been the experience from the beginning. My son is seriously ill, and I feel that he should have had his treatment at the Maudsley long before now and therefore maybe have been able to get on with his life which has been on hold for years now due to lack of treatment. I feel that it is shameful and scandalous that staff are a law unto themselves and provide, in my view, a really shabby, incompetent, uncaring and unprofessional service.

I am now taking legal advice with a view to starting a private prosecution against Kent & Medway NHS Social Care & Partnership Trust for failing in their Duty of Care to my son and contributing to his further deterioration, not to mention the impact on his family. This seems to be our only route now.

Response from Fiona Morrissey, Patient Experience advisor, KMPT 6 years ago
Fiona Morrissey
Patient Experience advisor,
KMPT

Submitted on 20/07/2018 at 14:38
Published on Care Opinion at 15:27

picture of Fiona Morrissey

Dear Lorena,

We are very sorry to hear of your latest experience and this is of concern and we do hope that you will continue to liaise with and be supported by PALS as you have found them to be helpful.

We advise that as a complaints process has began that you do continue to be supported by Patient Advice and Liaison Service (PALS) through this process. They can be contacted on 0800 783 9972 and their email is pals@kmpt.nhs.uk.

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Lorena (a parent/guardian)

Thank you for your reply. Unfortunately, the person that we were dealing with at PALS is off for a while. My son is extremely disappointed as they had some positive conversations and felt they had developed a rapport. I know that this possibly couldn't be helped but it is yet another of a series of setbacks he has had to endure over the past few years.

How is someone who is very vulnerable and extremely unwell suppose to handle all this frustration on top of everything else?

Response from Fiona Morrissey, Patient Experience advisor, KMPT 6 years ago
Fiona Morrissey
Patient Experience advisor,
KMPT

Submitted on 30/07/2018 at 14:42
Published on Care Opinion at 14:58

picture of Fiona Morrissey

Dear Lorena,

We are very sorry to hear of the latest experience for both of you and this is of concern and we do encourage you to continue to liaise with and be supported by PALS as you have found them to be helpful and another one of the PALS team will be able to help and support you.

We advise that as a complaints process has began that you do continue to be supported by Patient Advice and Liaison Service (PALS) through this process. They can be contacted on 0800 783 9972 and their email is pals@kmpt.nhs.uk.

Thank you for taking the time to share your experiences and this will help us to learn and improve our services.

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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