Medical Input

[Scoobydoo70]

Hi, my dad was diagnosed with CBD in October 2018 but has had no follow up since the diagnosis. As dad is now bed bound and can do nothing for himself we have Carers coming in 4 times a day to help with daily living, district nurses now attend twice a week due to pressure sores and his GP did a referral to outpatient hospice care who are in touch every week. I was just wondering how much follow up others are having and from which speciality?

[Amth_1948]

Hello Scoobydoo70 Where about in the UK do you reside? My wife has CBD & bed ridden sadly. I’m my wife’s full time carer. Heart of Kent our local hospice has been brilliant. My wife was taken into the hospice & discharged with a care package organised by the hospice through the NHS (continuing health care) funded by the NHS. Lots of support kicked in, NRS the NHS supplier of equipment lent us a hoist, shower chair & harness also a hospital air mattress & bed to prevent bed sores. Your district nurse should help you to access the above. My wife as with your dad can’t do anything for herself. I do get carers coming in 4 times day. To be honest you sometimes you’ve to be a nuisance in the nicest possible way. I hope you I’ve helped you either way please response to my text. Like to know what other areas offer their clients. God bless you. Alex

[Scoobydoo70 in reply to Amth_1948]

Thank you for your reply we are on the London/ Kent border. Dad has gradually received all the equipment you mention above through the Carers and his district nurse and he is under St Christopher’s Hospice for outpatient community care. Currently my dad contributes to his care as we have not received CHC funding but it is something I will be looking into. Does your wife have any follow up with neurology or is it like my dad once diagnosed no follow up?

[Amth_1948 in reply to Scoobydoo70]

My wife Anne is under UCHL. Pro. Hew Morris is a leading specialist in the CBD field however I believe the team in Cambridge are also very good. We’ve regular phone consultations, it’s not the same like a face to face appointment. The reason we get the funding for my wife is classed as end of life & in palliative care. If you can get your hospice or your consultant to confirm this then your dad should get CHC funding. To be honest I can cope with looking after my wife without the care but take it because it comes in handy sometimes. I don’t consider looking after my wife as shore but a privilege. Best wishes.

Alex

[AJK2001]

I wouldn't worry too much about follow up from Neurologist. We gave up going to the appointments as it was so difficult & stressful for Mum and they could offer no actual help, as unfortunately the nature of the condition is it can't be treated, only it's symptons and the people best able to help with those are your GP & Community Health team. Mum's Neurologist, she was under Salford Royal, did start doing telephone consultations for house bound patients just over a year ago. We had one a couple of weeks before Mum died & I know another lady who had one for her husband as well. I think it had eventually got through that it's not always possible to get patients to a clinic. So you could try contacting the Neurology dept and asking for this. I would expect them to be far more open to this now. If you don't get anywhere try the hospital PALS team, they are usually very good at helping to get something done and as Alex sais, sometimes you have to make a nuisance of yourself.

I would definitly look into getting CHC funding - lots of useful stuff on this site & also the PSPA website about how to put a robust claim together.

Good luck xxx

[Scoobydoo70 in reply to AJK2001]

Thank you

[daddysgirl1916]

Hiya!

My dad never had follow up appointments, he also had CBD .. they didn’t really do much to be honest, mainly because they didn’t know very much. We were his full time carers.

It was only in the end we had medical intervention.. do ring the GP though as we stayed in touch with him. He was very helpful in providing medication to alleviate some symptoms.

Sending lots of love ❤️