Absolutely unbelievable - not in a good way!

[Martha_k_uk]

Hi All,

I apologise in advance for this rant, because I'm absolutely livid and don't know where else to air my frustration. I also apologise if none of this makes sense I'm so upset!

As you know, my dad is in a nursing home, and I feel we are really struggling to get the real support he needs. Anyway, for 2 weeks the nursing home have been faffing with the GP to get urinalysis results, and finally antibiotics. He should have antibiotics today, but after 2 weeks from the first dip test, with obvious haematuria even to the naked eye it's not acceptable.

Anyway, I rang the GP to chase antibiotics, and also to discuss 2 other things:

1. GP said they were referring dad for physio

2. Nursing home requested muscle relaxant due to rigidity and GP said no as it would interact with his medication (sinemet - which, after instruction from neuro consultant should already be reducing as it has no effect). GP said they felt it was something the consultant should arrange...I wanted to ask if they'd fed this back to the consultant.

Anyway, GP wasn't available to talk (understandably) but I have a telephone consultation arranged for Tuesday afternoon. However, I asked the receptionist for an update on the physio referral and she read me an excerpt from the letter, referring my dad for assistance with his Parkinsons.

I just about lost the plot. I told the receptionist that he doesn't have Parkinsons, and why did they think he has. She said the header on his notes was Parkinson's and that had been put there by a previous doctor.

They clearly have no clue about my dad at all. I am so furious, upset, angry, fed up, worn out etc etc. I don't even know where to go from here...no wonder they don't seem to be able to support him effectively if they don't even understand his condition.

Why is everything such a struggle? I'm fed up of fighting, arguing and feeling angry...I can't do this anymore!

[LeighWoodward]

Can 100 percent sympathise with you on all this. We have had very similar frustrations though not in a nursing home.

[Martha_k_uk in reply to LeighWoodward]

The nursing home are not at fault to be fair. They have the same frustrations with the GP. The nursing home is as good as it can be and they are trying really hard to find ways to help make things comfortable for my dad. I'm just astounded that the GP could misunderstand their patient so blatantly.

Leigh I feel your pain...everything about this disease is just bloody awful!

[Kevin_1]

Hi Martha

What a nightmare! I'm not surprised you are upset. It must be like walking in treacle.

Can you telephone the neurologists secretary and ask for a telephone consultation? I have done that a few times - it works wonders as the GP then gets a letter advising them.

Yes, its a constant struggle. It has worn me down a few times!

Wishing you the best

Warmly

Kevin

[Martha_k_uk in reply to Kevin_1]

Thanks Kevin

I will ring tomorrow - I don't have the energy for it today.

I know everyone is fighting the same fight, it's just exhausting 🙁

[Heady]

Sorry to be negitative , but YES! Every single day of Steve's journey. The PSPA sent our surgery no end of booklets about PSP, not one person ever read them. Someone even phone to speak to the GP, total waste of time. Once when Steve was in hospital, I was asked what the fuss was about, "It was only Parkinson's!" Strange, but I didn't try and kill him!!!

I really understand how you feel. I am afraid it's choosing which battle you have to fight. Accept the ones you can't win. I know it's not fair, but then nothing about PSP is.

Sending big hug and much love

Lots of love

Anne

[JR61]

This link may have some relevant pointers for your health care team. Also the PSPA has a telephone helpline. Does the nursing home have its own GP if so it may be wise to investigate changing to them if the Home recommends them to reduce confusion and time in all the lengthy discussions. My Dad had a urine infection and from the carers in the home first noticing something was wrong, to actually testing and obtaining /administering antibiotics was under an hour as they contacted the home’s GP. Ruth x

pspassociation.org.uk/for-p...

[Martha_k_uk in reply to JR61]

Thanks JR61. This is the GP that serves the nursing home. His old GP was fantastic but once he went into thebhome he wasnt able to stay there and had to change.

We feel so removed from them.now as they interact through the home...however rest assured whenni finally get my telepohoone consultation next week they will be under no illusion as to the extent of.his condition.

[JR61]

We also had a very good Neuro Matron who co-ordinated the multi disciplinary team that oversaw dad’s care. (The neurologist referred dad to her). I dont know if this was a local system or whether it is nationwide but if you can get them on your side and you get a good one they will fight your corner with GPS etc. We were also referred to the hospice . Like most things unfortunately, it seems that there is a great disparity and a real postcode lottery. Ruth x

[Martha_k_uk in reply to JR61]

We have a Neuro nurse - but no mdt to speak of. Neuro nurse is very pleasant but not very effective. Was last saw her a month ago and she spent most of her time with us and popped in to day hi to dad.

Since then she was supposed to ring social worker to chase hospice support, GP to update on situation and then call me back to update...So far I have heard nothing.

[JR61 in reply to Martha_k_uk]

I would chase her up tbh. Don’t let it ride, as unfortunately you may get forgotten, or they will assume you aren’t desperate enough and keep you waiting. I learned that you have to fight for everything and I developed very sharp elbows, eventually, making sure my Dad wasn’t pushed aside after advice from others in this site. Be polite but persistent. We had an OT, Physio, Falls Team and SALT, to advise on swallowing issues etc, on a regular basis and also the Neuro Matron, Parkinson’s Nurse and Hospice involved. Goodness knows how patients with no one to fight their corner cope, it’s frightening. Also don’t be put off you have nothing to lose and everything to gain. Ruth x

[Katiebow]

It's enough to send you insane, why oh why s it such a battle to get the message over that PSP is a disease in its own sh----y right. Why are some medical personnel unwilling to listen, read or talk to people with knowledge on the disease, makes me come to the conclusion that they are in the wrong job! It makes such a difference when you have an effective professional team to support you and your dad, I disparity at many of the professional involved in Ben's care and the way you have to chase people up to get them to visit, the Parkinson's nurse hadn't shown her face for months, 18months wait to see neurologist, in the end we paid privately to see the neurologist of our choice. The GP has been really good and the SALT and Hospice have been the most supportive of all. It's really not good enough to have such a wide difference in the individuals who should be supporting your dad.

Sending you love and virtual support

Kate xxx

[Spiralsparkle]

Unfortunately yes everything is a fight and it is so so wrong. It makes me so angry but that is wasting prescious energy I don't have anymore.

It.does seem a postcode lottery on the support different areas give, ours unfortunately seems to be rock bottom as the hospice aren't on board anymore either. Mum is still at home not in a nursing home.

I've just been sat here now writing another list of people I need to chase up yet again. It gets tedious and soul destroying and at the same time having to see the person you love declining before your eyes.

[Martha_k_uk in reply to Spiralsparkle]

My heart goes out to you - it is so draining. I really hope you get some good support for your mum soon xx

[Spiralsparkle in reply to Martha_k_uk]

Same to you for your Dad. Hope the antibiotics help him

[johns65]

My husband was diagnosed with PSP in March of 2016. He died March of 2018, just a few weeks ago. When we admitted him to the nursing homes or had any doctor appointments, the first thing that came out of my mouth was, JIM HAS PSP. I told anyone that would listen the information I knew of on PSP so they were well aware and many of them didn't even hear about PSP yet. Many would mention how they went on line to get more information on the subject. It made us feel like we were at least on the same page. Don't be afraid of speaking up for the sake of your loved one because they need that support. Shout it out. Good luck to you and yours and hope this helps in a small way. Joyce in Minnesota USA

[Hidden]

Print up everything you can find on PSP get it to nursing home staff and DR.

We were so fortunate our brand new GP didnt know anything about it, so she immediately read all about it.

[margh2468]

Hi, I certainly feel for you, P.S.P is relatively unknown to most G.P's they tend to just dismiss it as Parkinsons or Parkinsonism, and treat it that way, Leon (hubby) was 1st diagnosed with Parkinsonism, and for 3 years was put on Sinemet, it actually gave him massive spasms, and did a lot more irreversable damage, I was actually the one that worked out his actual illness, and when I said I thought it was P.S.P to his Neurologist, his comment, I think you are barking up the right tree!!!!!! Leon is now in care, after 8 years, and I don't know how he would be if I was not there as his voice daily. He gets so so frustrated, because they just don't understand his needs. They are absolutely wonderful, but it is so hard for us as carers and them as people looking after him(or trying to). I feel constantly guilty trying to have time out, but it is hard for me too. Don't give in, climb that endless mountain, hugs to you Marg from Howlong N.S.W. Australia