I know I have not done a post in a while, but I have been going through hell trying to get the right support due to how my health has deteriorated. So I thought I share my email with you all which I have wrote too my local social service manager raising my concern. So I also included the local MP, AM, town council and Councillor for my area into this as well. The MP and AM were aware of the situation.
I am so angry, upset, and feeling totally let down. I know the struggles the social care and health care sector is facing as I have worked in it myself for most of my career. But how can I be left like this to struggle.
Hi there.
I have been in contact with Social Services recently explaining about a deterioration in my mobility and difficulties with walking distances on my own with crutchesdue to have multiple multiple spinal issues. I also explained how I am having difficulties with lifting my legs onto my knee to wash them.
I have also raised concerns about how socially isolated I have become due to be an unpaid carer for my mum and due to my limited mobility. I have ended up on the floor in my bungalow and outside many times in the last 2 months due to my leg giving way.
My GP said I am meant to do be doing very little and the state of my spine is of an 80 year old man. It not just pain that is causing my problems. I'm not meant to clean or do any lifting.
I have recently found out that when I was 9 years old I got diagnosed with oesteoporosis at the age of 9 and it was meant to be managed and treated by the gp at the time and in nearly 30 years it hasn't. It going to take a least a tear to get a bone density scan to confirm this diagnosis.
In the space of 10 months I have gone from walking upright to now unable to barely manage distances as my left left keeps giving way from under me with crutches on my own so I would have to wait for my partner to visit fron Cardiff before I can go out. I also can't handle public transport.
I am also an unpaid carer for my mum and yes we had aids and adaptions assessments for the bungalow and she got aids to help her with her personal etc.
I was advised by my GP and also my mum OT Anne-marie to contact the duty desk to have an OT assessment done due to the deterioration in my needs.
I emailed in and explained the situation to the duty desk and they said that there was nothing that could be done and a referral to an OT would not be arranged. I was also told there was no funding for aids to help me with the difficulties I am now facing with my own personal carer.
Physio will not work with me until I been seen by a spinal specialist which is over a 3 year wait for the initial appointment and my gp done all they can for me.
My mum OT ended up ordering me a self-propelling wheelchair herself which wont really be suitable if i wanted to go out on my own as propelling it myself could make my spinal conditions worse, so still have to rely on someone to take me out and also given me some aids they had to help me with washing my lower half and with dressing.
I have been saying for the last year how socially isolated I become and have only 1 friend in the Borough who I can't even visit as they live in Cwn.
I was asked if I do still my driving lesson which are being funded by motability and waiting to be reassessed to see of the car is still suitable as my mum now requires an electric wheelchair. So the car I have on order will be unsuitable and I'm waiting to be reassessed by them to have a grant for a suitable car and hoist which will delay me getting a car through them as it can take over a year to get an adapted car.
The only advice I had was to give up driving lessons if I'm in too much pain and do online shopping. I also finding travelling on the local bus services too much due to the way the roads can be narrow so you moving around a lot in your seat.
So can I please raise my case as a concern as I feel that I have been neglected by social services and have not been listened too since ever since I made first contact with Social Service. I have also supposedly have had full carers assessments which I don't believe were of a high standard.
Due to not just issue going on but others as well I am continuously fighting the system to get heard. Fighting the DWP for 2 years to get the correct benefits for both me and my mum, fighting social services for 2 years to get the right support for me and my mum.
Also due to being sexually abused as a child and recently reporting it to the police, and I was under trauma counselling with New Pathways, but due to all the ongoing issues I had to stop that because I had to many other negative stressor to deal with. I am awaiting an assessment with the Community Mental Health Team, but waiting lists are long too. I am on the verge of a mental break down and the urges to self harm and end it are getting worse. I won't do it due my responsibilities and my partner, but I am in a very vulnerable. I have a form of disassociation disorder due to trauma and mask how difficult things are.
Having no friends around me or being able to get out of the bungalow independently is really taking it toll on me. I do not know who to turn too and when I ask for help and explain my situation I just keep walking into closed doors.
How can I be left to live like this. It is also impacting on my mum and making her health worse as she is so worried and stressed about me too and can see how difficult things have become for me.
Can I also ask;
1) Why am I being left to become so socially isolated.
2) Why was I refused a referral to the Community Resource Team to be reassessed.
3) If there was no funding for aids to help me, why did my mum OT requested these aids to help me.
4) Why has the community connectors services never been suggested to me and my mum and why have they not emailed me back to my initial email I sent over a month ago.
5) What support will I recieve to help care for my mum when she has her pacemaker operation next month. As if she requires help with personal care, I will not be able to do this.
6) Why does it seem that me learning to drive is being held against me?. When it seems to be the only option to get any form of independence.
I am sorry for having to write this email and I know the struggles the NHS and Social care have because I have previously worked in the sector for my whole career. But how can I be left neglected like this and not be listened too.
Thanks
John Bond
Does any of my readers have any advice.










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