Friday, 30 November 2018

Dear Theresa May,

Dear Theresa May ,

I would like to bring your attention to my families current situation and the chaos and uncertainty our local Children's Services brings to us.

My daughter is poorly, shes been poorly for a while. three years of illness which has affected my family irreversibly.

My daughters illness is in her mind but shes as poorly as a person who needs a wheelchair, as much at risk of death as an oncology patient but yet we continue to suffer.

Over the last three years her illness has grown progressively worse due to a complete lack of effective services. As a family we have waited in A&E for 5 hours on numerous occasions, waited on a paediatric ward for five weeks for a bed, we have travelled hundreds of miles because there was no local beds and we have been locked inside our house to keep her alive.

And now it seems my daughters needs are too expensive for Children's Social care to prioritise.

She has been sat in a Psychiatric unit since September waiting for a placement. She needs a placement that can continue the fantastic work the unit has provided, whilst safeguarding her from exploitation and encouraging her progress.

We are at the mercy of a service that you provide that see's my daughter as nothing but pound signs.

Last week after a complaint was made by both myself and NHS England, finally children's social care offered us a light at the end of the tunnel , we won a battle to prevent her from being placed in an environment in which every other professional felt would not safeguard her and finally, my daughter had some positive news, a three month placement which would give her the opportunity to move on , away from a clinical setting and back into the real world where she has the opportunity to rebuild her life and continue to learn to live with her illness.

My daughter visited her new placement, met the staff and was making plans on her move when this morning we are told that actually this wont be happening because the processes have not been followed by the social care team. I have been told all plans for the move are to be put on hold while some issues need to be looked into.  What are these issues??

Money

Why does my beautiful, articulate daughter who has the potential to an amazing future have a £ sign above her head. Why is she a folder on a desk to the services that my family have paid into for at least 80 years- with a promise that help will be there at the point of need?

A Solicitor advises me there is nothing to be done until negligence has occurred.
Reading between the lines my daughter has to come to significant harm or death before i am able to make Children's social care accountable for a failure to meet their duty of care.

And if this happens i will  i will sell everything i own to make Children's Social Care accountable for the service that continues to cause someone who is already very unwell feel like a massive inconvenience.

 I have fought for three years to access the services she needs, i have been passed from professional to professional in an inconsistent and overstretched service which is failing children and young people across the country.

Theresa, i am trying to tell my daughter that she is valuable, that she will go on to do great things and contribute to our society. I am asking my daughter please dont take yourself away from this world there are so many things you haven't yet seen and done yet.

How do i do this when society puts a price tag on the value to people and their futures

Please please invest in our young people , stop making them feel that Mental Health is an inconvenience.

Run your services properly to prevent families living in turmoil and anxiety whilst your professionals squabble over who's responsibility it is to help someone in need. Look at the conduct of Somerset County Council and tell me my family has been treated fairly.

Please provide effective services to families before it becomes too late.

Yours Hopefully.

Thursday, 19 July 2018

Childrens Social Care Assessment

So writing this blog today so fed up and stressed (im sorry my blogs are always so miserable!)

K is still in the camhs psychiatric ward. I have told the services that my own mental health is really struggling and I am unsure whether i am able to care for her going forward. 

I feel lots of shame for saying that and need to justify myself. 

Since shes been away (9 weeks now) i have had more time to myself then ive had in the last three years. Time to think and reflect on what we've been through, the services we've received and how little we've moved forward. 
I am now realising that actually my parenting and coping mechanisms facilitate Ks behaviour. I have spent the last 3 years so fearful that ill lose her that ive taken all responsibility away from her and have created an environment where I try to meet every need and prevent any upset or stress to keep her behaviour manageable. 

Alas! this hasn't worked because look where we are now!

Since shes been away anxiety that i haven't experienced in over 10 years has returned and i now feel completely hopeless to our future. I really dont feel that i can care for K in a way in which she can grow and become independent.

Enter Children's Social Care. (boo or clap! its up to you how you feel about this under staffed and under financed service)

When i met with V from the assessment team of children's social care another ray of hope popped up for me. can this woman, this service, help me find a better way to support my daughter and maintain my own mental health and identity. Can she help me explore other ways for K to live if being cared for by me is doing her more harm than good?

No she cant. 

After our second meeting i knew that no she cant. Of all the professionals ive met with in these three years of caring for K, this woman leaves me feeling deflated, useless and a failure. This is not her intention, i know that. V is a nice woman and im sure very good at her job in preventing children becoming the responsibility of CSC.  
I misunderstood what the purpose of this assessment was. 
I thought it was to explore and evaluate the options that may improve Ks situation and give her a fighting chance of becoming more independent and of us as a family having a decent quality of life. Its not. It seems her job is to ensure that children's social care dont have to take responsibility for this young person. like all the other services we deal with she is looking to the others to provide a service and pay for it.

So this is our current cycle-

the CAMHs ward says K is ready for discharge and needs to attend trauma therapy/ DBT in the community, the main reason (apparently) that she is not discharged is my current state of mind and my ability to manage her behaviour. They are awaiting the outcome of CSC's assessment. K currently has a wound infection which she is refusing anti-biotics because she feels someone is trying to poison her. She also took a quantity of paracetamols when allowed out on unescorted leave alone last week but yes apparently ready for discharge. 

The CAMHS community team say that trauma therapy is safest carried out in the ward due to Ks suicidal ideation and the emotions that she experiences whilst exploring these memories. Our relationship with the camh's team is not great and its fair to say K and I have little faith in their support. Before being admitted i was given advice to lock her in the house to keep her safe, this is now being denied by he staff member. i will be asking for an advocate in all future meetings so they cant deny what is said. 

Get Set  requested the assessment due to disclosures K has made whilst in inpatients about historical incidents but this has quickly moved to being an issue of will Mum have her home?
Get set continue to work with K around safeguarding but we've been told this week that she will be leaving in September. 

Childrens Social Care  V is conducting her assessment and is speaking to all relevant people. Her meetings with K have not been successful and i question how experienced V is in working with young people with mental health issues. She has told me that Ks needs are too complex for a foster placement, she would be too vulnerable in a young persons supported living environment and is ready for discharge from the ward, when I say well i just dont know what to do her response is 'Well you're her mother'. 
V is currently arranging a family conference in which my sisters will be invited to discuss what they can do to support if K returns to the family home. Both my sisters have young families and jobs, my only real consistent support has always been my sisters they do as much as they can and are actually the only people i really have in my corner. 
If they could take her they would, if they could offer more support they would. 

Adult MH Services  i saw my doctor about 9 weeks ago feeling down and hopeless, he increased my meds to 60mg and said that should help me cope better. they havent.
I contacted my GP's about 3 weeks ago and told them i felt in a really dark place and could not see a way forward for us as a family . 
Had a phone call from a CPN,  we chatted for about half an hour before giving me an appointment for a month later and a telephone number to call if I'm in a crisis with a risk of suicide. 




All these people involved in trying to keep one 16 year old alive. and me. of course.

The thing that i am struggling the most in this whole assessment scenario is that it has become about my mental health and my ability to cope 

shouldn't it be about-

  • Why this young person is so intent on harming herself and how can she be encouraged to take some responsibility for her own future
  • Why has it been three years, involvement of multiple services and no improvement
  • How any single parent could cope with this level of care-giving whilst maintaining their own health.
  • How many professionals have built a relationship with this young person and then left their job role 
  • Why a parent must feel a complete failure when trying to endure sleepless nights, constant anxiety and complete dis-empowerment. 
I dont know. I feel so anxious about our future to the point that i cant really see a future.
my experience of the services is that ultimately i will be left to manage on my own again and then criticised for the coping mechanisms i adopt to cope. 

I feel like i want to pack up a bag and bugger off. 













Thursday, 21 June 2018

Where we are

Havent blogged at all this year. And i have received some lovely messages asking how things are and if we are ok so i thought i'd blog an update.

Things are still difficult. 
The last time i wrote in December last year i had discharged K from a cygnet hospital hundreds of miles because she was suffering terrible bullying from another young person and her mental health just seemed to be getting worse. 

On her return she seemed like a different person. She had been prescribed Risperidone and Clamazapam whilst with Cygnet and was a muted version of her self. CAMHs here in Somerset weren't really happy with the meds or the doses and so immediately changed her prescription and Christmas was terrible as she struggled through her Clamazapam withdrawal. She suffered from sweating, loss of appetite, fatigue. it was awful. 
But she remained on Risperidone. 

In the new year it was decided at her care plan review that DBT was the best course of action for K. She had always fought against doing the DBT course as she finds spending time with other young people very difficult. But she reluctantly agreed and did try really hard to cope. However her mental health just seemed to be getting worse. 
At the same time i approached Talking therapies for some support and was offered a webinar in which i could log into each week and listen to pyschologists offer advice on managing depression and anxiety. This didnt work for me. One because my depression and anxiety isnt generalised it is as a result of our lifestyle and two with Ks appointments and needs it was very difficult to log on at the specified time as it clashed with Ks DBT appointments. i did try to log on at the train station but could barely hear anything and it drained my mobile battery so no good! What i needed (and still need) is someone to talk to but that is not available.

In March Ks mental health continued to deteriorate. We had a short break booked for the end of the month and K told me that this was the only thing keeping her going and she couldn't guarantee she could stay alive once we returned. She had secretly stopped taking her risperidone because she was experiencing voices/intrusive thoughts telling her they were poisoned. Camhs advised me to put a lock on the bedroom door and to lock all external doors to prevent her leaving the housing while i slept. 
I barely slept and my anxiety started to become more heightened until i decided i could not do this any longer and took her to A&E.  the advice on a mental health crisis for young people is ' if you do not feel you can keep her safe then go to A&E'. im not sure if this is the same for adults.
We sat in A&E for fours hours until finally at 1am we were taken to the children's ward. We remained on the children's ward for 25 days waiting for a bed for K in a unit. 
I made it very clear to CAMHs that i would not accept a bed for her more than a 100 miles a way. Some people have voiced to me that this was an unreasonable request. but i didn't care! 

We had done the whole 225 miles away scenario which had been a pointless and wasteful experience nothing was gained from this other than a private hospital chain making a hefty profit form the NHS purse. I wasn't prepared to put either of us through that again. 
I refused a bed in Cheadle (even further than the previous hospital!) and after a lengthy discussion with the CAMHs manager, a few emails to cover my back and show my logic and the thought process to this decision, a miracle happened! a bed became available in a hospital in our own town. 

K has been at this hospital for nine weeks. 
She has regular home leave visits which have been variable in their success. It seems to me she feels safer when she is locked in the unit, i dont really know how to offer her that level of safety at home.
She is not taking any medication at all. She now refuses paracetamol or ibuprofen for fear that they have been tampered with and is no longer on anti depressants
Our experience at this unit has been so much better than the one in Manchester. 
It is an NHS ran unit and im not sure whether this is why i find it so much more communicative and inclusive or because she is closer to home so the camhs team can work with the hospital in a much better joined-up way. 

But progress still feels slow. The Psychology assessment to determine the way forward for K is still being formulated, her voices around medication and perceived threat are yet to be addressed. Since stopping her fluroxetine she has been angrier and lower in mood and her suicidal ideations are still very much present.  

But in other ways she has made massive progress and i am very proud of her. She has confronted her issues around being around her peer group and has made friends, she has began to open up a little and talk to professionals about her thoughts and has began to let previously suppressed emotions come to the surface. 
Something that she finds incredibly difficult to do for fear of judgement and ridicule.

As for me, i am struggling through. i find it very difficult to do the normal things i should be doing when she isnt here- like preparing meals or spending time outside the house. i guess my identity is so enmeshed in my caring role and keeping her safe. its very difficult to motivate myself to do these things unless shes on home leave and its for her. I know this frustrates my son but i dont know how to stop doing this. 

My own health is now under the spotlight. i developed a little fatty lump above my eye in February which google told me was caused by my cholesterol. 
Blood tests confirmed that my cholesterol had risen quite drastically in the last two years along with my weight and my blood pressure. The aches and pains, which started off occasional but are now every day and make me like im 80 yrs old rather that 40, which i had put down to being less active and heavier could be a diagnosis of Fibromyalgia. 
I am reluctant to pursue a diagnosis for Fibro even though at times i can barely walk down the stairs or get up from a sitting position for reasons i dont want to explore right now. 

So thats where we are, no further forward than six months ago really but still plodding on. 

I'd like to say thank you to those that have messaged, and as always im always here if anyone thinks my experiences can help with anything they are going through x






Friday, 29 December 2017

Reasons to Stay Alive- Matt Haig Book Review and Giveaway



What does it mean to feel truly alive?

'This is the true story of how Matt Haig came through crisis, triumphed over a mental illness that almost destroyed him and learned to live again. Moving, funny and joyous, Reasons to Stay Alive is more than a memoir. It is a book about making the most of your time on earth.'


Reasons to stay alive is a very personal and honest account of Matt Haig's experience of depression and anxiety. The book tells the story of a deep and debilitating illness and the effects it has on the sufferer and his loved ones. 
The book takes the reader through the darkness of depression and anxiety as well as the light at the end of a sometimes very distant depressive tunnel. 
The book is written in small chapters, which makes it easy to read and references wise quotes from philosophers, artists and authors. 
The book breaks from the convention of your average memoir with the Matts lists of insightful and amusing thought patterns and then and now conversations which are very relatable. 

I really enjoyed this book but I think it's important to recognise that this book is a story of someone's journey and is not a self-help book. 
Anyone that reads my blog will know that I am painfully honest about the struggles that myself and my daughter face through her battle with mental health and I feel that Matt Haig's Reasons to stay alive delivers an honest and relatable account of the absolute misery that is depression and anxiety.

I especially appreciate Matts account of anxiety and how controlling and life-changing anxiety can be. The chapter named 'The Art of Walking On Your Own' mirrors very accurately my own experiences for anxiety when I was in my 20s and behaviours I now see in my own daughter.

On going to the shop alone-

'This is crazy
This is the craziest thing I have ever done
Its just a shop
It's just a shop you have been in, on your own, five hundred times before
Get a grip. Get a grip. But on what? There is nothing to grip onto. Everything is slippy.
Life is so infinitely hard. It involves a thousand tasks all at once. And I am a thousand different people, all fleeing away from the centre.'
.
Unless you have experienced Anxiety, it is very difficult to understand the irrationality and control it has over your life and I think this book depicts anxiety in a way that makes it easier for those supporting sufferers to understand the thought processes of those suffocated by it.

There are two things that I really want to point out to the potential reader of this book

Firstly before I read this book I checked out the Amazon reviews and there were a few negative reviews regarding Matts lifestyle and how lucky and privileged he is with his trips abroad, support network and loving girlfriend (now wife)  but for me this is the exact thing that makes this book so good and so relatable.It challenges the stigma of depression. 

Not everyone who suffers from depression does so as a result of PTSD or difficult or an abusive childhood or living in poverty and unemployment.  
People who from the outside can seem privileged or 'normal' can suffer from mental health problems too because it is an illness of the brain, a chemical imbalance not always because of social causes. 

My second point is that this book will not give you a happy ending. 
Because depression is lifelong. It will rear its ugly head from time to time. 
This book won't offer the reader reasons to stay alive and I think if Matt Haig had tried to do that it would have been patronising because reasons to live are personal to each human,  but what he does do is highlight that there are reasons to stay alive and if you hang in there you will find the strength to look to the future.

My one minor criticism of this book is that although Matt talks about things getting better and living again he doesn't provide much detail on whether he used talking therapies or CBT, he does make it clear that medication wasn't an option for him although doesn't deter his readers from exploring this option. He does highlight the importance of lifestyle choices such as running, meditation and reading. Perhaps he didn't seek professional help form therapists? its not clear. 

But what is clear from the conclusion of Reasons To Stay Alive is that although depression and anxiety are life-changing you can learn to understand and challenge those demons and take the control back.

You can have a future. 


Because I loved this book so much I am giving away three copies, just follow the Rafflecopter link, Giveaway ends 15th January at 11.59.



These giveaway prizes have been purchased independently and this giveaway is not affiliated with the Author

T&Cs

  • The closing date is 15th  January 2018 at 23.59 (GMT).
  • Open to UK residents aged 18 or over
  • Three winners  will receive a copy of Reasons to Stay Alive by Matt Haig
  • Entrants must log in via Rafflecopter 
  • Only one entry per Household
  • Winner will be randomly generated by Rafflecopter
  • All entries will be moderated.
  • The winner will be informed by email within 7 days of the closing date, and must respond within 7 days to claim their prize.
  • Winners name will be announced on Social media
  • This prize draw is governed by English law and the courts of England shall have exclusive jurisdiction over any dispute arising in connection with it

Tuesday, 19 December 2017

CAMHs- More hindrance than help

So K is back home.

I brought her home with the help of my sister last Thursday from Manchester she coped very well with the travel home. 

We have settled back into home life but yet again CAMHs are making my ability to cope very difficult. 
I know my decision to discharge K and bring her back to Somerset was against their advice and has probably increased their workload but to be honest I care about that as much as they care about sending peoples children hundreds of miles away to an inferior medical facility. 
When I discharged K from Cynet Bury they would only give us enough medication to last 4 days. I spoke to her care coordinator on Wednesday with my intention to discharge her that day so they were well aware she would need a new prescription, rang and spoke to her Pysch's medical secretary on Thursday afternoon to confirm what she needed and she promised to arrange a prescription to be put in the post Friday morning. 
Its now Tuesday, and no prescription. K is now on the 2nd day without Fluoxetine and Risperidone.




I've spent the morning on the phone and all I seem to meet is a shrugged shoulder attitude from the professionals. I've spoken to the CAMHs receptionist who relayed a conversation she had had with the medical secretary which pretty much stated that they posted it on Friday, they cant control the post and that as I couldn't personally collect it on Friday there wasn't anything further they can do. Spoke to NHS 111 who whilst were very friendly and helpful, cant arrange a prescription without speaking to the Psych it has to be down to a doctor, who yesterday told me they cant write a prescription without discharge notes and info from the psych either! 
Finally spoke to a manager at CAMHs who basically said he won't fax another prescription until tomorrow in case it turns up. He advised there won't be any negative withdrawal effects for at least 48 hours from the abrupt halt of the medication. i sincerley hope he is right about that. 

Why do they make it so hard for me to cope? If big boss man can fax a prescription tomorrow then why couldn't they have done that on Friday? Why not today? 

If I'm being irrational (which at the moment I mostly am) i feel this is CAMHs reaction to me discharging her from Hospital against their advice, a punishment. I guess they think why should they bend over backwards to sort out a prescription when she should be in Manchester. 

What they don't realise is the pressure and stress this puts me under as her carer. 
I can control most things, but I do not have the ability to access her medicines without their help.

One of the things that have been highlighted to me by family and by Professionals in the last month has been how unassertive I am. How I don't feel able to make demands for what I need, I've always been a bit of a doormat- a product of my childhood unfortunately but I don't think this only applies to my children but to my relationship with Ks mental health team too.

Since she has come home I have coped very well. In fact, the only time I have felt overwhelmed, anxious or out of control has in fact been with the stress of the missing prescription. and with my dealing with the CAMHs professionals. I have managed her moods very well. 

In my current struggling state of mind, i feel like I don't want to engage with these services anymore and that through their failing all they actually do is make my situation to cope with Ks mental health (and protect my own) harder.

Wish i could sign off this post abit more positively!