4 weeks ago my mum was referred to the Incontinence team and the community matron but I have heard nothing , should I be chasing the GP by now ?
The Incontinence is driving me spare I've bought pads for the bed and large Incontinence pads for during the night but we still have wet bed clothes and sheets , mum doesn't realise when she is or isn't wet she gets distressed and upset , I try to reassure her that it's ok it's only washing and I keep telling her it's not her fault it's the PSP but hate seeing her so upset.
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Sophiejo
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Make the call....You are her greatest advocate....You tell the dr what your mum needs, the things she is going through, and that you have been waiting for a fulfillment from Incontinence Team . Do It NOW!
Sounds like the same as our services here. Defo chase. Unfortunately it may be a continual chasing game. I seem to spend hours on the phone chasing everyone up. A case of he who a hours the loudest all round x
Have you heard of Kylie sheets? They are expensive but cut the washing down. I also bought things from the chemist (Boots) which you can use too and used to put one on top too as my husband managed to wet the duvet! Once was enough! The carers kept telling me how clever it was but that's what they are meant for? Until you get this sorted hopefully the aim is damage limitation?
Ring them up asap but the Kylie and other continence products really kept me sane! I even used them after he had continence products from the NHS. Yes I had to buy them but it was worth it!
It took 2 months from me asking for a referral to seeing someone, not that it was a great deal of help, she said it was his age and cut out caffeine! It then took another 6 weeks to get out first delivery of NHS pads. I put 2 children's disposable cot protectors on top of our bottom sheet, I use them the wrong way up and the put a couple of old pillow cases or old sheets cut down, it does save on washing, but I do find the pads leak if they become too wet and he hasn't woken up
Definitely get on the GPs case. You have to keep saying she is terribly distressed, no quality of life, won't see anyone because she's embarrassed , etc etc. The worst possible scenario. Anyway most of it is probably true but all those kind of phrases tick boxes for them and that's what it's all about I'm afraid. Good luck with that. Incontinence is a bummer. My hubby Heading for both kinds at the moment but coping ok for now, with the odd FFS thrown in. Marie
You need to put some pressure on the GP. It took three months with pestering the GP for the incontinence nurse to show up. In the end it was useless she would send sample pads (only 4) on a fortnightly basis. The pads were useless, couldn't absorb the quantity needed. We asked her for the heavy duty pads and were told NHS procedure to start with minimum absorption. My mum would be soaked through everyday !! But procedure is procedure. We just used or own pads until we got to the right level and didn't tell her, no point. We bought our own Tena pads with special Tena pants to keep the large pads in place, normal underwear doesn't work. The incontinence nurse help really kicked in when it comes to bladder retention and getting a catheter. So, my advice is char them, but as usual don't expect miracles.
Definitely contact GP but also if you have contact with your hospice and District Nurses get them on your case sometimes they are better at short cutting the system.
Thank you for your responses - we feel a little alone , mum was under the DN and in the local hospice end august beginning september for assessment but since discharge no contact from anyone is this normal that they provide no follow up ?
Sorry Sophie, but yes what you are experiencing is totally normal. Everyone is brilliant at assessing and discharging, but some how the bit in the middle gets lost along the way!!! why have the hospice discharged you? DN's I know do it for a past time, but hospices are normally pretty good. I would phone and speak to them. Well I am afraid you need to get on to everyone. Never EVER let anybody discharge you, you must fight that one.
Please don't let that lonely feeling get you down, we are all here to support you, one large family, who have your back. Rant and rave as much as you need, we will listen and try and put you on the right path.
I got really fed up with waiting around for help that my dad had been promised, and got on the phone to the GP, insisted that we had a named GP who was responsible for his care, and explained the areas we needed help with. Within 2 days, I had the most amazing response and within one week, all areas of help had been addressed, referrals left, right and centre. Definitely hassle your GP, ask for another hospice referral, if the GP doesn't help with this then the neuro nurse should. Dad is starting hospice visits next week, and the senior nurse there said they would help deal with any areas with which we were struggling. The DN is now coming out weekly to keep in touch and has offered a continence assessment. I've been so much happier since I had a strong poke at the GP and insisted on some action, so it's definitely worth a strong word or two. I think you and I are in the same boat, from what I've read of your previous posts, I completely understand. It's all consuming isn't it? Sarah x
Thanks Sarah , I'll get onto the GP tomorrow ! We only see a certain GP who actually was the one who said he thought mum had PSP and referred us to neuro - he is normally really good but seems as mum has savings no one wants to know and we (read me ) are having to do everything and it's a case of we ( I ) don't know where to start plus mum is stubborn and doesn't want to get careers in or go to day care if offered at hospice she's not that outgoing and only has a few friends so I'm stuck between a rock and hard place.
Have you seen caretobedifferent.co.uk? I found that site really helpful. My parents have savings and we thought they'd have to pay for everything. I bought the e-book and have read it through, and we have a CHC checklist visit next week. My dad is a very private person, and we NEVER thought he'd say yes to the hospice day care, but the senior nurse who came out to us really sold it to him. We were stunned when he agreed. My mum was reluctant to let him go, but I sold it to her by saying that he'll be surrounded by experts who have seen PSP before and will help us with symptom awareness and management. I think no one 'wants' carers in, but there will come a point where you really can't cope, and I've explained to my parents that mum (and I) need to be emotionally and physically in reasonable shape to be able to be cheerful and capable around dad as his PSP progresses. So we're going to put things in place as soon as possible so we're not trying to do it at the last minute when we find we can't cope. Mum is hanging on by the skin of her teeth, so this hospice thing really is timely. Our DN came out within two days of my initial contact - do you have a number where you can get directly in touch with yours? Ours gave us a sheet with numbers we could use to contact their team 24/7 with any symptom queries or worries. Might be worth asking the DN, the neuro nurse and the GP all at the same time re the continence assessment, as they can all action. It's hard enough for me, and I've got my mum doing the main bit, I haven't a clue how you manage on your own x
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