We had a very unhelpful DR’s apt this morning. The red/purple patch with a bright pink ring around it on the rear of her calf is down to edema and Nan needs to raise both legs above her hips for most of the day. The problem I have is she has TB lesions on her left hip and it is fixed so doesn’t move. This causes problems in rising from chairs and raising that leg, the femur hasn’t grown fully either so is shorter than her other leg. Her other leg is now well worn due to depending on it over the TB one. Raising both legs at the same time is something she cannot do and finds it difficult to lie on her back. If we used pillows to raise them over night she wouldn’t be able to get out which means someone would have to be with her and awake to get up her up to go to the toilet but also she can’t phsyically do it anyway.
The Dr has said that as they are unable to do anything medically due to poor kdiney function which would be made worse with medication for the edema. I’m totally at a loss and pretty annoyed that having already spent a considerable sum of money on every foot stool and raiser I can find before resorting to a beanbag that the Dr has dismissed our efforts and have said it’s not good enough and it’s up to us to get her legs above her hips for the majority of the day.
So to the point of this, how can I get her reffered to an OT and Physio who will work together to find a solution to this? The OT we have is less than helpful as she said then don’t put them up. I am starting actually no I’ve totally lost patients with this, I’m in no way qualified to dream up contoronist moves or circus equipment to make this happen and feel the professionals should have a bigger input with it.
Sorry for moaning and most of all sorry for this never ending broken record.
One of the worst thing about being a carer is dealing with people who are paid and qualified but don’t look at the situation properly and don’t hear what is said.
I might have a solution to the leg problem. After I had a knee replacement one of my knees was very swollen after I accidentally leant on the leg drain and it came out! Once home, I rang my pharmacy, who know me well, and asked if a Circulation Booster would help? The pharmacist told me he used his every night, and recommended one. It was amazing, my swollen knee and feet went down really quickly. It was expensive, around £180. The patient sits normally with feet on the foot pads and the muscles are electrically stimulated, and the amount is controlled by the user.
A TENS machine works in a similar way I believe. One of these would not require sitting normally, but should still be able to stimulate muscles.
I understand they are no good for patients with heart pacemakers.
Maybe an initial internet search to see what is out there, then consult a phsio or OT?
Ah yes the one thing I hadn’t put in my original post is that she does have a pacemaker. I think that changes things because as you say some machines can’t be used with a pacemaker. To be honest I’d willingly find the money somehow if it would help it’s just getting everything to fit together. I’m going to have a search now something may turn up.
Thank you I feel a bit better now. I was rather deflated and annoyed earlier but it’s easing now.
They aren’t exactly local 23 miles being the closest so I highly doubt a home visit would occur and how do I get a referral or are these private? I’m starting to really think I do need to rob a bank or something at least in prison I wouldn’t have bills to worry about.
I’ll be honest I haven’t a clue, I kind of hoped there would be a way of changing or seeing a specialist rather like a referal from a gp to a hospital specialist…okay so typing that I now realise exactly how stupid I am because it’s obvious that wouldn’t happen.
You need to be a pest. That is the only way. Sadly GPs don’t typically refer you. When I had a bad experience with a therapist, I wrote a polite but strongly worded email asking the head of the therapy department to basically recommend someone else.
Perhaps try that approach and see what happens as a result? Or you can call. What about patient liaison services? Can you contact them? They might be able to help. Request a second opinion.
We have a social services OT and because I am deaf and they will not accept or use next generation text I cannot phone and email does not appear to be working as when I contacted her about toilet rails she had no clue what I was talking about despite giving her all the details again. I was thinking perhaps instead of someone who pics items from a catalogue someone who would make the effort to drive 4.3 miles from town and see the difficulties with movement may be of more help. I know from experience they won’t want to drive that far.
I am starting to think I should step down I just don’t have the finances to do what is needed and not being able to make phone calls is just making everything worse…nans nearest other family is in mid wales who we rarely see or hear from and I don’t know their financial circumstances but I do know I don’t have the money needed to get the services she needs and I hate seeing her struggle because I am so useless.
As a life long deafie I do not have enough gcses let alone a levels for degree entry and even if I did I don’t have the money for an interpreter which is not covered at degree level by student loans or disability support…assuming I could get past that as an OT i would need a constant interpreter and note taker…three salaries not one and access to work will not cover the full cost that’s without the issue of GDPR and confidentiality that states some services cannot communicate via third parties even with consent…yes its harsh…yes its discrimination to a level but it does protect vulnerable people so I support it and accept there are things I cannot do. .
There is one thing I am good at…being useless in pretty much every area of life.
You are NOT useless,
I’m dismayed that an OT cannot communicate properly because she doesn’t have suitable phone equipment, when they are supposed to be the ones helping disabled people. They have a duty to make “reasonable adjustments” by law.
Will they not accept emails from you either? After all, your written skills are faultless.
Dont ever say you are useless!! Doing all the things you do for your Nan make you a very capable lovely person in my eyes.
When I was in my last job, processing the DBS for the council, had many calls via a telephone relay for the hearing impaired. Its not hard for someone with a smidgen of common sense to do. As its says, relaying messages. Its the OT that are useless, certainly not you.
Sounds like you need an advocate , someone who can write letters, make phone calls, help you access services easily.
Social Services can tell you about local advocacy services available, or you may even be entitled to one through the Care Act.
Our O.T. department is pretty useless, and they just haven’t got the funding for equipment anymore.
We just had to buy everything for ourselves, toilet stand, walker, rollator, and anything else needed.
Good idea, Care Act advocates should be made available to you, free of charge, by Social Services if you are having difficulty in getting your voice heard.
This would indicate an “urgent need for further training” for everyone you have been in touch with, as they should all be aware of the Care Act!
Sorry I did not mean to come across as wanting sympathy/attention. I’m going to start afresh and appeal through care direct to social services for a new OT and perhaps they can liase with a physio. I’m going to state in my email/letter that I am struggling to communicate wtih the current OT and that a new one who is happy to email and use relay services would be better.
Pet66 you made me giggle, not even NHS111 will use relay in this area. I’m told that in other areas they do but not here. Devon appears to be the bermuda triangle of the UK.
BB I’ve tried emial, it’s easy for them to ignore. I can wait weeks and then email again requesting an update and STILL no replies. I have no way of knowing if the OT is off sick, annual leave or just ignoring my emails. I think this time I am also going to request a second point of contact in case it’s needed with lack of commmunication. I’m going to draft this over the weekend so I can tweek it and add things as I think of them. I’m also going to ask a local councillor for some help as we are still waiting some 5 weeks later for toilet rails that are supposedly coming straight from the OT suppliers as it’s quicker than waiting for the council, which is hilarious they have it done in a week/10 days. Although that could be that the workmen like turning up as I’m happy for them to have coffee/tea and biscuits as they are generally so good at working around us and I’ve always got biscuit dough in the freezer as I only ever cook half a batch of what I make at a time.
Thank you so much for helping, I really appreciate it especially as I was at a total loss where to go next.
Contact SS for support. They can provide more information on advocacy services in your area. Maybe try using the council instead? We fitted in a new shower in the spring of this year and the workmen were all recommended to me by the local council.
Please don’t call yourself useless. What a fantastic job you are doing advocating for your Nan despite the barriers thrown at you. It is so frustrating that you are not being listened to. Doubly frustrating that you are finding it hard to access help because you are deaf. What a disgrace.
As BB says services by law HAVE to make reasonable adjustment for those who have a disability. And in your case this is relatively easy as they can use email even if they don’t have a text phone, no special equipment required really. I would go old school and write them a letter send it signed-for delivery and tell them that you expect a resolution otherwise you will be taking legal action and contacting your MP and local press.
Do you have an Age UK in your area? Might be worth contact to see if they have any suggestions about getting some further OT help? They might be able to help point you in the right direction.
I definitely second seeing if you could access an advocate through social services to help with communication and getting your voice heard.
Best of luck. I am not a “shouter” but in 8 years of care have learnt that sadly you have to be or you are ignored.