PSP swallowing problem

[Kaylewis]

PSP. Hi does any one have a loved one that is being risk fed due to poor swollowing, we are now told that no agency or continuing care staff can feed mum they can only do care??

[Careenh]

Hi kaylewis. We were 'risk feeding ' my mum, albeit pureed foods and thickened drinks. The swallowing/choking became quite distressing for her. She has recently had the PEG feed tube fitted so this will help. Doesn't stop the choking though as this is due to a build up of mucus and saliva. You have to decide what is best for you and your loved one. ❤❤❤

[Kaylewis in reply to Careenh]

Hi thankyou for your reply, mum refused a peg tube two years ago she has always said no and is now non verbal. X

[Kevin_1]

Hello kaylewis

My wife is very poor on the swallowing front and can now only manage liquids and it is the nursing home care staff who feed her. Before that it was the care agency staff, in the community, who were feeding her.

You mentioned CHC staff. So I assume you got your CHC? Bravo! If the CHC are taking this view (which seems very over risk averse) then by default they are saying that feeding is now a clinical issue. They are required,under the National Framework, to meet all clinical issues. So I would put that one back in their lap.

The carers we have had are more than capable of feeding someone with poor swallow. However I suspect the concern might be their ability to manage with choking. If they are saying it's not safe for a carer to do the food, then it is certainly not safe for you to do it - using their logic.

I hope this helps a little.

Best to you

Kevin

[Kaylewis in reply to Kevin_1]

Thankyou. X

[kenh1]

If you are CHC funded you should have a first point of contact, with us it is the District Nurses. If I have a problem I ring them up and cry help. I was unhappy with our care company following a disturbing CQC report. I rang the nurses and had a new and much better company within two days. If you tell them of your problem they should provide a solution.

Best wishes.

Ken

[Sayer]

Unfortunately difficult swallowing is a principal characteristic of PSP and without doubt PEG tube is the best and probably the only way forward. If your mum is at home it will be very simple and easy for you to care for her.

If you decide on a PEG see you GP and arrange for one to be fitted at your local hospital. Many have a special unit for this. Fitting a PEG is is not a general anaesthetic procedure.

Your district nurse and dietician should now become involved. They will organise the special liquid feeds, arrange its delivery, (its a prescription item), decide on the feed needed and show you what to do. Honestly it's so simple.

Re agencies. I do not know where you live. In Berkshire we have access to 'Crossroads.'

Many of their staff are trained to PEG feed. You may have similar organisations nearby. What I am saying is that it is not true that no agency or continuing care staff can feed you mum. District nurses can also PEG feed but I doubt if it's possible to have this service on a daily basis.

Depending on your/mum's circumstances you may have to pay for visiting staff. I repeat, it's so easy to do your self. The above is based on my experience as a carer and if you think I can help more get in touch. <[e-mail].

[Kaylewis in reply to Sayer]

Thankyou.

[cameoboy11]

Hi i have swallowing problems and my speech therapist is on the case ! Jo x