I don't want to complain but........ - PSP Association

PSP Association

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I don't want to complain but........

Kathy profile image
7 Replies

Actually I think it's really important to complain when things go wrong. We have had huge problems with the District Nursing service, which caused untold stress and distress both to Mum and Dad and the rest of the family, too :-( I went throught the PALS service to make a formal complaint as I felt something should be said. My letter ran to 4 pages of A4!! Just last week we got a response from the PCT who acknowledged that they had failed in their duty of care towards Mum and highlighting failures in adhering to protocols and poor communication. We got an "apology" of sorts, although it was fairly "underwhelming" in it's sincerity but, more importantly, the response listed changes they have implemented /intend to implement to the service as a result of our complaint :-) and I have to say things have improved! It's not perfect by any means but it is very much better! Hopefully, Mum won't be the only ones to benefit from these changes so it is definitely woth comlaining as I am sure there are hundreds of frail or vulnerable people "out there" who don't have someone to stand up and shout on their behalf.

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Kathy profile image
Kathy
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7 Replies
jillannf6 profile image
jillannf6

hi kathy

good for you for making and takign the trouble

not enouogh people u r right ot shout on other's behalf

lol JIll

;-)

concernedfamily profile image
concernedfamily

Hi Kathy,

Well done we have to stand up for our vunerable parents that are too ill or frightened to speak out. I did same as you and fortunately had an excellent Geriatric consultant that had my mum moved to a different hospital and she got the care that she needed after breaking her back! My mum lost 3 stone in 8 weeks as she was not being fed either. So well done to you and I would urge everyone to stand up for what is right basic care should be given to all patients and vunerable elderly should not be discriminated against.

Norma

cabbagecottage profile image
cabbagecottage

I think a lot of people don't like to complain because they are afraid it will make things worse .

Maybe we are lucky in the area where we live but the district nurses have been most caring and helpful . Long may it continue .

Unfortunately I cannot say the same about the assessment re occupational therapists are concerned . They did come eventually in the first place but I recently got in touch again for a further review . It was like talking to the wall we have to start at the beginning again .

I don't bother them very often normally get on with it and work things out for myself . Very often a better outcome ..

SheilaN profile image
SheilaN

Complaining doesn't come easily to me either but there have been times when, as my husband's only voice, and out of loyalty to him, I have gritted my teeth and done it. When I could no longer bare to watch carers doing a poor job and at times treating him as if he was stupid (through poor training, poor management and indifference to him and his condition) I wrote to complain. The company carried out a thorough investigation and I can only hope that they improved their training and the care given to others;by then our relationship had broken down completely and we went to another care company. I had resisted changing for months in an attempt to avoid too much change and upheaval for my husband but from the minute the new carers arrived my worries disappeared.. The improvement was amazing and I wished I'd changed much earlier.

On his return from a highly recommended respite care home I found Eddie in a dreadful state; poor personal care resulting in pressure sores, dehydration and general neglect. I tried to keep my complaints in house but when the operations manager suggested that the problems had started on his journey home and then failed to investigate and get back to me I took my concerns to the care commission. As a result of mine and others' complaints as well as the CC intervention and subsequent recommendations the OP was let go, the chief exec thanked me for highlighting poor service and massive changes were made.

The two episodes made me tougher in terms of expecting high standards for Eddie. Thankfully the military care home where he is now is marvellous. They respond to changes very quickly, keep me informed of what's happening and follow up my requests and suggestions where appropriate. They have his wellbeing at the heart of everything they do. I have absolutely no regrets at all that our house is up for sale because of the financial implications of his care. It's worth every penny.

If you need to complain do so. You are your loved one's voice.

Take care

SheilaN

Kathy profile image
Kathy in reply to SheilaN

Dear Sheila,

I'm sorry you and Eddie had to go through such awful experiences before you managed to find somewhere where he is well cared for - it shouldn't be like that and makes me so cross!!!

Take care and much love to both of you

Kathy xxxx

SheilaN profile image
SheilaN in reply to Kathy

Thanks Kathy.

I have had similar issues and it is only now after months and months of nagging various people and keeping a diary that things are happening for Mum. It was quite refreshing that the lady that came to insitgate mum's claim for CHC today actually understands PSP(hurrah!). It was such a delight to hear her talking to mum normally. As for district nurse- the word makes my lips curl, as does the social worker and the local dementia service who we saw before mum's eventual correct diagnosis. I am sure these people are marvellous in the fields they are trained in and we can only hope for better training towards understanding PSP.Take care,

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