Aging and managing pain.

2cats25
2cats25 Online Community Member Posts: 15 Connected
edited June 2024 in Cerebral Palsy Network

Hi all,

Can anybody relate to this as I can't understand why I can't access any help, but I don't want anyone to think I'm sitting on a pity pot.

I'm 65 next month and live alone. I have Left sided Hemiplegia and feel as if my body is worn out. I'm unable to use my left hand and my right hand has been overused for decades. I've had surgery for tennis and golfers elbow, carpal tunnel, and had several cortisone injections to ease the pain in my right hand. I now have very bad arthritis on that side and a surgeon wants to remove a bone from my thumb (Trapeziectomy) to reduce the pain.

This is classed as day surgery. I will be in a cast/bandages for 5 weeks. I contacted my local council and GP surgery to ask how I might arrange aftercare. Both told me the hospital would arrange this. The surgeon's team attempted this but was told by the council they couldn't do anything till I was discharged from hospital (even with an arranged date).Even then it could take a few weeks to organise help. The problem is the surgeon is working for the NHS out of a private hospital and there is no question of a hospital stay. I was given a two- day trial with a dummy cast and had lots of difficulties, I even had a fall, slap bang on the cast and it took me ages to get up off the floor as I couldn't weight bear on my arms. Seven weeks on and I still have awful pain in my upper right arm (muscle strain?)

I dithered about having the surgery as I am actually fearful about the convalescent period, but have now agreed to it because I feel my right hand/arm is 'strung out'. I would like it to be suspended in mid-air as when it touches anything I get hot, tingly pain, awful arthritis and my arm feels stiff and sore. I can't see a decent way forward. With or without the surgery my future seems grim. What will happen to me if I lose the power in my right hand and I can't get help from the NHS? My biggest fear is not being able to turn a key to get outside in an emergency, or being able to use a phone. My brain has stopped being logical and everything seems bleak. I hope to speak to a doctor later today to ask for stronger meds to tide me over until I have the surgery.

Has anyone else felt they have run out of treatment options?

Comments

  • 2cats25
    2cats25 Online Community Member Posts: 15 Connected

    Have to admit I'm saddened and surprised that readers of my post did not have any thoughts on how to survive with CP and much reduced use of my arms. Surely, I can't be the only person with this problem? The doctor's answer was more meds for the moment…now three of the same kind but need to take them in rotation.

    No solution yet to the care aspect of my convalescence and future needs. If I have to arrange and pay for this myself, I hope the services take PIP vouchers…if the way this benefit is paid changes. I feel I'm too independent to live in a care home. I don't even know whether such a service exists for aging CP sufferers. We know CP exacerbates the aging process on the body, but mentally I still strive to manage the challenges life brings.

    I would dearly love to know how other people manage when they live alone.

  • Richard_Scope
    Richard_Scope Posts: 3,793 Cerebral Palsy Network

    Hi @2cats25

    The hospital should arrange a 6-week aftercare package for after the surgery. It is vitally important that your GP is proactive in supporting you to make this happen. I would also recommend that you ask for a needs assessment from the Adult Social Care team at your local authority. An Occupational Therapist will assess your home and make recommendations for any equipment that will preserve your independence and make life easier.

    I understand how you are feeling. All of our lives, particularly if we are from older generations, we were told "There's no such word as can't", which in my view was counter-productive and for some damaging to their mental health. Then an event, or a series of small events happens that make us have to re-evaluate who and where we are. By reaching out to services like Adult Social Care, you haven't failed in any way. You are making a smart decision and taking control,

  • 2cats25
    2cats25 Online Community Member Posts: 15 Connected

    Hi, thank you for your thought- provoking reply. Here's an update on my situation. Surgery is booked for 5 weeks -time. I have recently had problems with pins and needles on my right side, affecting my speech and ability to walk in addition to problems that CP brings. I was blue -lighted to A & E but thankfully it wasn't a Stroke, the episodes continue but the cause is a mystery.

    I contacted my GP surgery for assistance in arranging surgery aftercare. The response was, they don't have a role here. It is up to Social Services to do this. I explained that the hospital has tried to pre-arrange care given they have a specific date for my operation. SS said nothing can be done beforehand and even when they do get a referral it could take weeks to put a package in place. What about emergency care? My situation is even more risky now that my right leg could buckle at any moment. I really am at a loss to know what to do next. Any suggestions would be welcome. I'll just sit here and scream. Arrgh!

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 309 Empowering
    edited August 2024

    Hi @2cats25

    Thank you for the update on your situation. It really does sound overwhelming, especially when you are preparing for an operation. It's disappointing to hear Social Services are not putting a care plan in place before the operation. Have you contacted them yourself or has this been through the hospital? I would contact them again and request to speak to a senior member of the team. Maybe put something in writing as well. This is temporary situation whilst you recover from surgery.

    Do you have any friends or family in the area who you can talk with. It sounds like you're managing a lot on your own. If you did need to speak with someone Disability Plus Counselling are a great support for people with CP.

    Sara

    CP Support

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 309 Empowering
  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 309 Empowering
  • 2cats25
    2cats25 Online Community Member Posts: 15 Connected

    Hi,

    I've just jumped on to give an update on my situation. I went for a pre-op assessment last week then got a call to say my surgery was being brought forward 10 days. As I busied myself preparing my home etc, I then received a phone call telling me surgery had been cancelled due to concerns regarding aftercare. I explained that the surgeon agreed to go ahead as I prioritised my need for surgery over piecemeal aftercare from social services, but it was confirmed a team decision was made to cancel as they couldn't help if anything went wrong afterwards.

    How on earth will I ever have this operation if NHS don't consider there are exceptional cases that don't fit neatly under the rules for day surgery. I am so disappointed and cannot see a solution to this situation. All I can see is another painful winter ahead.

    Avice anyone?

  • Jimm_Alumni
    Jimm_Alumni Scope alumni Posts: 5,713 Championing
    edited September 2024

    Frankly after reading your post @2cats25 I am baffled that they brought the surgery forward by 10 days, just to cancel it entirely?

    I would consider talking to your hospitals Patient Advice and Liaison Service (PALS). They're an independent service who can try to resolve issues informally with the hospital and can often deal with things more quickly than a complaint (which has to be investigated in depth first and then a report made which all takes a while).

    Of course, they need to guarantee you will be looked after post-surgery, but given the way they've gone about this I totally understand your frustration.

  • Richard_Scope
    Richard_Scope Posts: 3,793 Cerebral Palsy Network

    @2cats25 as you know the aftercare should be arranged by the hospital and usually covers 6 weeks of support post-discharge. If a care package cannot be arranged in time then there is usually a delayed discharge from the hospital. This is not an ideal situation either but at least you would have the support. If you do want to take this further then as @Jimm_Scope has suggested contact PALS. The hospital has a duty of care to support you post-surgery and should not be cancelling on the basis that Social Care has said they can't provide a care package.

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