My CP and work.

dnlshannon67

Hi,my name is Daniel [removed by moderator - personal details] and I have mild CP.I have managed to work my entire life,but over the last few years I have really started to struggle both physically and mentally.Obviously,i have always struggled,but my age is now against me.I know i will not physically last until i'm 67,but i cannot afford to stop working.I work for the NHS as a housekeeper on a ride on cleaning machine.The machine enables me to do my job as I have mobility issues and chronic muscle spasms.I can no longer work on wards.I also reduced my hours a few years ago as recommended by Occy Health.I have had to fight for this as my management are not very supportive.The machine regularly breaks down.This is the cause of my problems.I was asked to go on a standing cleaning machine,I said I would but I'm not supposed to go on it,and i would have to stop and sit down when i'm in pain.This was agreed.I'm scared to say no.After going on it for a few days my muscle spasms increased and I physically could not walk.I had to increase my medication to help me.Sadly,it has made me realise that I cannot physically do my job on the standing cleaning machine and I have had to go sick until the sit on machine is fixed.This will take a while.It's the NHS.I am nearly 59 years old and I constantly feel fatigued,due to the effort of trying to work.I am scared of the consequences when I go back to work as my past history with management is not very good.I am scared about the future as I finally have to admit I cannot do my job anymore.I try to stay fit and go to the gym when I can.I also get the minimum amount of pip which enables me to have a day off work.I also worry about the government changes and how that will affect me.I need some support as I feel very low at the moment.

Rosie_Scope

Hi @dnlshannon67, welcome to the community. Sorry to hear your managers aren't very supportive of you. It can make all the difference to your daily life having people on your side.

Have you ever spoken to a benefits adviser to see if there's anything else you might be eligible for? There may be some benefits that could help you live more comfortably if you're not able to work as much or need to take a break. Turn2Us have an advice finder to find local help: https://advicefinder.turn2us.org.uk/

Have you considered perhaps taking ill health retirement or would you like to continue working if the support was there? If you'd like to read about ill-health retirement there are some details here: https://www.scope.org.uk/advice-and-support/stopping-work-ill-health-retirement

It can really take a toll on your mental health when you have to think about making big changes to your working life. Hope you're managing okay. Do you get any support for your mental health at all? Or do you have any close friends or family members you could chat to about how you've been feeling?

I'm sure our other members will have some ideas too so I hope they'll be along soon ☺️

I'll also tag some of our CP team to see if they have any other tips for you: @Richard_Scope @SaraC_Scope @Lucy_Scope

Trevor_PIP

@dnlshannon67 you have worked all your life with a disability, so well done and don"t knock yourself. You have done right going sick as you are struggling to use the new machine, management should provide you with a suitable machine that will allow you to work without detriment to your disabilities. You should not have to increase your medication to do the job either. I have had heard a few stories like yours involving NHS management, I understand you may not get on with them and I doubt I would either. In theory, the sit down machine should be getting urgently fixed so you can do your job, not having to fear management because they failed to do that! if you feel you have had enough of work due to your worsening disability it may be better to leave work with possible early retirement and claim benefits. You have done your best and don't worry about the future. You could go and see Citizens Advice on what to do while on the sick. There are no planned changes to PIP until after the investigations and reports are completed, which will be after Autumn 2026, so don't be worrying about that now. If your disabilities have worsened you may be able to increase your PIP award to the Enhanced rate, Citizens Advice could advise on that too. Best wishes for the future!

Kimi87

I would recommend speaking to ACAS who can advise you of your rights

https://www.acas.org.uk/

SaraC_Scope

@dnlshannon67 Welcome to the community.

I'm Sara one of the CP specialists here at Scope. I can relate to your work situation in so many ways. I have right sided hemiplegia and experienced issues in a previous role with the local authority. Like the NHS you'd think they would be understanding and supportive, but sadly not in my case.

I can feel the frustrations you're experiencing and if being on sick leave is what you need right now, then that's ok. @Trevor_PIP is absolutely right in saying your work equipment should meet your needs. They have a responsibility to make reasonable adjustments and if the sit down cleaner allowed you to do your job, that's what you should be using.

Can you have conversations with HR about this and if you have a return to work meeting, can you take a friend or family member for support.

I'm part of the CP Network here at Scope and we host monthly online meetings. You are welcome to join this network if you wish.

Cerebral Palsy (CP) Network | Disability charity Scope UK

You are also welcome to have a conversation with our team if you feel that would help.

Take care.

dnlshannon67

Thank you for your support.It means a lot to me.My wife and family support me,but i don't like to worry them.I will no doubt be referred to Occy Health when I return to work.I will keep you posted.

Richard_Scope

Hi @dnlshannon67

It's good to meet you. A you in a Union?

As we age, the effects of living with CP can change. CP is a lifelong condition, and occupational health should be aware of that and suggest reasonable adjustments to you.

dnlshannon67

Hi Richard

Luckily I am in a union,I will be contacting them when I return to work.

dnlshannon67

Hi Everyone.

I want let everyone know what has happened since my return to work.Relating to my previous post.I am back at work with the ride on cleaning machine repaired,for now.I work for the NHS.I have triggered a stage 1 sickness meeting and I also requested a meeting with Occy Health.I realised when I was off sick that unless I am on the ride on cleaning machine,I can no longer physically do my job properly.I have mild cp as stated in my previous post.My manager is waiting for my Occy Health report to make a decision on how to support me.This is where the problem lies.I have had problems with my manager in the past and I simply do not trust her judgement.She has never really supported me,but follows procedures.I am 59 years old and I now struggle physically and mentally.I am constantly fatigued and worry about the consequences of being off sick.I have worked all my life and I have been discriminated against many times.I feel I cannot leave as no one will employ me,it was hard enough when I was young.I am in the Union at work,and they will support me.My problem is I will have to stop work in the near future as I feel it is too much for me,but I cannot afford to stop.I know nothing about benefits or what I would be entitled to.Although I do get the minimum amount of pip.My CP is mild but causes me lots of problems now I'm older.I just need a bit of friendly advice from people who understand my problems,People have made judgements and assumptions about me all my life,and they always look at what I cannot do instead of what I can do.I am mentally and physically exhausted,and I do not know what to do.I am scared.Sorry to ramble on,but this has helped me to get things off my chest.l have never asked for any support ever in my life,so this is strange for me.I have tried to keep going,but I am finding it hard to carry on.

SaraC_Scope

@dnlshannon67

Thank you for updating us on your situation. It sounds like you are handling things in the appropriate manner by involving your union and OH. I understand this can feel awful because you are almost having to prove yourself in a role you have been doing for a long time. This is exactly what happened to me.

In my case I had an admin role and I was 40 at the time, but I was still aware I might have to look for another job because of the stress it was causing me. It was an uncertain time. But I used the union and mediation service, along with counselling to work through the process.

I had to use that period to almost educate my colleagues across the local government, that although I was seizure free, I still had epilepsy and took high doses of medication each day, which meant I experienced short term memory issues. My CP didn't just mean because it only impacted my right side, I couldn't do all physical tasks one handed.

The OH report should detail to your manager what you need to do your job effectively. If they follow it for a few weeks, then stop. You can raise the issue again with HR or your union.

Please consider attending one of our online CP Network meetings, following the link in my previous message. You can meet and chat with likeminded individuals. There is also a great Facebook page called Cerebral Palsy Adult Advice UK where you can ask questions about situations like this. People on the group will have experienced similar things and respond to posts quickly.

dnlshannon67

Hi sara c.Thank you for the advice.I feel slightly more in control of matters now I've got things off my chest.I will have a look at the cp network,but I do not go on any social media.As I tend to just keep close to my family for support,but I will keep you posted.