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Advice needed please.

(61 Posts)
Anniebach Sun 13-Oct-19 14:06:18

Had x rays end of June, a GP thought problem with femur, knee badly twisted. Had x rays, radiologist said ‘you have a lump, expect you will need a scan’.

Phoned surgery for results, arthritis in knee, hip and base of spine’, I asked ‘and the lump ? ‘, ‘ what lump ? There is no lump you have been referred to the physiotherapy dept,

Waited , then phoned physiotherapy dept, I hadn’t been referred to them, they phoned surgery, error, and I had been referred to a consultant.

Had appointment with consultant, am dependant on MIND staff to take me, had to cancel appointment because it was World Mental Health Day so staff too busy,

Physiotherapy dept sent a community physiotherapist to see me. She gave me lots of exercises to do, I did say I would like to speak to the consultant first because the surgery did seem
more confused than me, and I want to know exactly what the problem is,

No, do the exercises and try walking without the trolley, (I use a two tier trolley to get around the house ), I am very fearful
of falling . I have an emergency alarm button but because I haven’t anyone to be my key holder if I press the alarm button
they will send an ambulance or if not available a police car ,

I have agoraphobia and the thought of being carted off to a hospital A & E , 20 miles away, sitting there alone for hours terrifies me,

I have been waiting since Spring for a hand rail to be fitted down garden path so I can walk outside.

I now want to ignore the physiotherapist, the exercises are so
painful, I will cope with the pain if I knew exactly what the x Ray results were.

Not having a key holder adds to my worries.

Am I being stupid ?

icanhandthemback Mon 14-Oct-19 13:06:49

I have no idea why the NHS think it is acceptable to give physio without knowing exactly what the problem is. This happened to two of my adult children and it was only when I insisted that they had MRI's first, it was discovered that they had prolapsed disks. This meant that the physio was tailored to their needs. Had it been another condition which is common with their genetic history, it could have been disastrous as the treatment is limited movement and full bed rest.
Have you had a fall at all, Anniebach? We found the Falls Team very helpful in getting aids sorted out and they sent an OT to assist in getting adjustments made. My suggestion is that you don't ring about results per se but make an appointment to see a Dr about the pain so you can discuss a way forward with this. Maybe someone from the MIND team could come with you to advocate.

grapefruitpip Mon 14-Oct-19 13:19:33

You need someone to coordinate all the various strands. If not a relative, outside help.

Suggest in the meantime , you prepare a point by point list of what's going on and who is responsible.

Anthea1948 Mon 14-Oct-19 13:21:56

It looks like there's lots of good advice here,Annie (I confess to not reading every reply) but I think the real problem is nobody following up on the 'lump' that you were told existed. The arthritis and such is painful, but we know what it entails and isn't as frightening as having a lump that nobody is talking about. I'd definitely try and get that resolved before anything else.
But as others have said, it's certainly worth persevering with those exercises if you can, even if it's just a little bit every day.

Anniebach Mon 14-Oct-19 13:23:30

icandhand no I haven’t had a fall, have the trolley. I think I will wait to see the consultant, recalling what the radiologist said after she checked the x rays, ‘ you have a lump, you may have to have a scan’ . My knee is badly twisted , knee cap not centre, three very large bulges size of tennis balls!

It will get sorted , thank you

maddyone Mon 14-Oct-19 14:09:35

Annie, I’m so sorry to hear about all of this, and no, you are not being stupid. When I was given exercises for my arthritic thumbs (I’ve now had the surgery for one and waiting for surgery for the other) the exercises caused me pain, and the therapist then said not to do them, the exercises should never cause pain, so I wouldn’t do the exercises if I were you.
The link that grapefruitpip provided is helpful, I think you need someone to accompany you if you have appointments and to advocate for you in other areas ie speaking to your GP because it appears you have been badly neglected by your GP practice. Also there is absolutely no way should have been waiting from last spring for your garden handrails to be fitted, if you could have gone outside a little during the summer it would have been so good for your mental health. Carry on using your trolley in the house, if you suffer a fall because you’re not using it, then there could be further complications with the arthritis. My elderly mother has a trolley specifically made for people with mobility issues, she always uses it when she goes out, and it’s helpful with her walking.

maddyone Mon 14-Oct-19 14:16:02

Sorry posted without finishing. I was thinking that maybe a trolley like this would be helpful. It folds to go in my car, and has a bag for her things and a seat for if she needs to sit down. The trolley can be used indoors too, but Mum doesn’t need it indoors.
You do need to see the consultant, it’s not good enough for a therapist to come to your house. Also the therapist should have ensured that the garden rails were being fitted.
Age Concern is another possible source of help. Perhaps you could phone them and tell them everything you have shared with us, I’m sure they will visit you and work out how best to go forward. Good luck.

Bluedaisy Mon 14-Oct-19 14:17:36

Please Anniebach phone up PALS (patient and liaison officers) at the hospital you are under and insist they get you an appointment with an orthopaedic consultant to put your mind at rest and for any questions you have. Be firm, if your not firm in this life you get nowhere.....remember the saying ‘he who shouts loudest etc’ .
Also google your local Social Services and ask to be put through to the Occupational Therapist department and refer yourself for an OT to come up and assess your home for any rails etc you may need. You can refer yourself for a carer if you need one.
Age concern should be able to put you in touch with someone to accompany you to appointments. As has been suggested before, write to your Doctor and tell them you need information and help or the practice Manager who should be able to help you with seeing a Doctor. It’s awful to say but you really have to make a bit of noise nowadays to get anywhere or be seen properly but at least you will then get a bit of help, you need it and should have it so please don’t worry as you said you wouldn’t have thought twice years ago for your daughter!

Anniebach Mon 14-Oct-19 14:31:39

Maddy my trolley isn’t for disability, it’s a two tier trolley , solid and with four wheels easy to turn in this tiny bungalow.

When I saw a G.P. 3 years ago about my hands she said
‘Age related arthritis, nothing can be done’, my fingers were not twisted , now on both hands 3 fingers are embedded into
the palms, I only have use of thumb and forefinger on each hand , hands never were never x rayed, I thought I had repetitive strain injury . Been told surgery can’t be done on hands !

I had garden pots planted at the front on the bungalow so it would be nice sitting there, needn’t have bothered couldn’t get there .

maddyone Mon 14-Oct-19 14:40:10

Yes Annie, I’d realised your trolley wasn’t for disability, I wondered if that type would be better for you. Anyway I’d carry on using the trolley as a fall would set off a whole lot of other problems.
You can definitely have hand surgery, my consultant is a hand and wrist specialist. The one who operated before had been out in Afghanistan putting back together the hands of servicemen who were injured in battle. He was very good. But he’s gone now and my new consultant is a Spanish lady who did give me steroid injections into the joint, painful but helpful. But now I’m beyond steroid injections as the joint is crumbling, so it’s surgery for me, hopefully in January. Ask to see a hand and wrist surgeon, they can definitely help.

Nanny41 Mon 14-Oct-19 14:58:50

Anniebach,I have always read your threads and feel I know you,I am so sorry you have to put up with this situation, you shouldnt have to, you are entitled to so much more help than you are getting.You are definately not being stupid, you are being neglected.I hope you get lots of help and less worry soon. Sending hugs.

trendygran Mon 14-Oct-19 16:16:53

Anniebach, .No ,you are not being stupid.. I have just been given a diagnosis of ‘severe arthritis’ in my hip ,which radiates down the whole of my right leg.I live on my own in a first floor apartment ,where it is difficult to make friends.The steps are becoming increasingly difficult and there is no lift.My daughter could be a key holder, but she and her DH are busy nurses with two young children,so could not always be available. I do worry about falling and I’ll health ,as had a major operation last year ,which has a lasting effect on my life.

pinkquartz Mon 14-Oct-19 16:55:19

Anniebach you are being treated very badly. I am so sorry that all these people are being so bad a their job.

Regarding possible falls I think you should send an email to the GP and to Social Services/OT dept saying you are afraid you will fall and then it will be more expensive for all involved as well as painful for you.
I have found it can be useful to mention money to councils as they are afraid of being sued.
If you have put your fear into words in an email then they are being negligent if they do not help you. The missing promised handrail is them being negligent.

I agree that you should ask for another GP appt and start again almost.

i understand your fear of going to the hospital but it really should not come to that.
The council are there to help and they have NOT done their job.
Please do follow this up. They will leave you at the back of the queue if you do not say anything,

I hope the help you needs comes soon. flowers

GrannyGravy13 Mon 14-Oct-19 17:15:37

Anniebach I hope when Age Concern visit you if you explain all your concerns to them as you have done so clearly on here that it will lead to some solutions for you.

I so wish I was closer ????

Anniebach Mon 14-Oct-19 18:01:25

You are all so kind, I am going to start speaking out/up, I had a letter today, just opened it, from Care and Repair asking me to fill in a form giving my views on their work/service for fitting the rail !

Will phone them in the morning and will also phone the appointments office at the hospital and ask if I am still on the waiting list to see the consultant, i am now concerned they didn’t keep on on the list , I had to cancel last week and explained why, I don’t trust them, I could be listed as ‘not turning up for the appointment.

trendygran are you able to leave your flat ? I am concerned
you too are coping with isolation

Alexa Mon 14-Oct-19 18:35:27

Dear Anniebach, I hope care and repair have made a nice handrail for you by now.'
You are wise not to continue with exercises if you feel that will increase your injury whatever it is. Wait till the consultant sees you. If its osteoarthritist that can safely wait.

Have you a proper walking frame with two wheels and two legs that stop the thing when you stop so it supports you?These have useful trays so you may still carry stuff a ound on it.

GabriellaG54 Mon 14-Oct-19 20:11:38

You don't mention it being a tea trolley AnnieBach just a trolley with two layers, which one would assume to be a type of double layered walking aid, not a tea trolley.
Your response is very negative about GP surgery, hospital, council, not being able to use Fred, not being able to go out (agoraphobia) not wanting to do exercises.
I'm sorry but there must be some positives in your life and I was partly endorsing what others have suggested and adding my own suggestions,
I had read about the council measuring path etc and wondered if your daughter would intervene as I'm sure she or your other family members, GD DB etc are concerned.
I wish you all the best and at least your therapist and GD visits, however irregular, bring you into contact with a bit of the outside world.

annep1 Mon 14-Oct-19 20:30:10

Physio doesn't always help GabriellaG54. I was sent for physio for arm pain in our health centre and ended up in agony for weeks. I had to pay for a scan to make sure nothing serious was wrong. Next time I have arm pain I will use painkillers.
Why will you not get a walker that you can use outside Anniebach.

annep1 Mon 14-Oct-19 20:32:12

Actually Benenden paid but what I mean is I had to do it privately.

grapefruitpip Mon 14-Oct-19 20:36:00

I dunno? Don't you have to let the dogs out somehow? Maybe that could be used as some sort of leverage.

GabriellaG54 Mon 14-Oct-19 20:40:23

Anniebach has previously mentioned that she has a dog walker who collects the dogs from her front door.

grapefruitpip Mon 14-Oct-19 20:43:51

Oh, so sorry, I must have missed that. Ah well, I tried to help. I think the advocate is the way to go.

All the best Annie.

Anniebach Mon 14-Oct-19 21:07:29

Thank you Alexa Care and Repair must surely fit the rail soon as they have asked for my opinions on their work !

Annepl I will continue doing the ankle twirling but no more, have no wish to have sciatica again as I did when first given the exercise instructions , ouch.

Laurely Mon 14-Oct-19 21:27:52

Annie: You have explained everything concisely, so that everyone reading this thread can see how the services that should be making your life less difficult are not working together. And since you post on GN, you are also reasonably comfortable with email/computers/IT. Your posts are readable and easy to follow. You have told us, and we can see how difficult your life is - but we are none of us able to do anything to help, except sympathise.

Now compose a long email including everything you have told us. Base it on your original post, add dates/names/places if you have them, then send it to all the organisations/people/services who are not working together for your good. By my count, that is the GP surgery/Medical practice; Radiography dept; Physio dept; Consultant; MIND; the Council. Don't do it one by one: send one, long email to all these simultaneously, and go as high up the management structure as you can. If you don't tell them, they will not be able to see the bigger picture of what it is like to be you. Gingergirl said it: voice your requirements. You are entitled to accurate diagnosis and appropriate treatment, and to aids such as a handrail. All the people you have seen are being paid to look after you; they should do it properly, and probably they would if they thought their salaries wouldn't be paid until they got it right. GRRRR!

Then come back and tell us when you have done it, and what the reaction is.

tidyskatemum Mon 14-Oct-19 21:38:57

This is so typical of "our wonderful NHS" Like the nursery rhyme, when it's good it's very very good but when it's bad it's horrid. So sorry you have drawn the short straw and being treated in such a cavalier fashion. Time for you or your nearest and dearest to start kicking and screaming!

Anniebach Mon 14-Oct-19 21:44:11

I will be ok, thank you all, it helps so much to be able to unload when you have no family near .

So sorry I have sounded negative