speech and language team

[Sun-flowerwearer]

16 days ago I posted about our first SALT visit and said I felt very positive that the practitioner understood PSP.

My husband newly diagnosed with PSP in April 2023 had begun struggling with swallowing food and I’d called the GP who referred us to SALT. In the weeks wait for the visit I had diligently researched the subject and had made changes to softer mashed foods etc and so I’d self managed the situation.

Yesterday I received a letter from SALT stating they had discharged us as felt we were managing excellently and their services were unlikely to be needed again!

So that suggests she doesn’t understand PSP and I was too cheerful and positive in the appointment. Also my husband was having a reasonably good day.

A lesson learned for me to not make assumptions that when they say they understand PSP they don’t necessarily understand it’s progressive nature …and I need to discuss properly what they feel next steps will be before leaving the appointment.

I know I can re refer back in via GP but the PSPA recommend not discharging patients from SALT as so critical as we progress. Husband is already not talking most days and very monosyllabic on other days.

The post is to say we need to check the people that come to see us really understand what’s ahead and understand PSP isn’t Parkinson’s as I think that’s what happened.

[Millidog]

Hi Sun flower wearer, a very informative post but so sorry you have faced this. After diagnosis we had approx 6 visits from both SALT and physio. At the end if which the SALT told us she was meant to discharge but she wasn't going to. She said it was policy but she understood PSP and that we would need her support so she now calls every 3 mths to get an update offer advice. She dies a yearly update and also offered to come out if we need. Physio did 6 visits and disappeared but I think influenced by the OT who's fabulous after my husband had a bad fall is now actively involved again, checking in, giving exercises and applying for a special funded rollator recognising the basic one doesn't suit. I think in both cases they are directed by their service to do a set of visits and discharge so I think we can end up at the mercy of someone just following the process and it can be down to the expertise of the individual to buck the trend. I do therefore think it helps if you push, be assertive or even stroppy and insist they tell you how, what and when they will help as psp progresses. Go get stroppy it does seem to work xxx

[Sun-flowerwearer in reply to Millidog]

Thank you for your reply Millidog… just had that conversation with a friend… who said unfortunately being polite and positive gets you no where. We are seeing our GP again for a routine follow up at the end of June and I will discuss this with her then….and also whether an OT should visit and assess our home. I appreciate the NHS is overwhelmed with demand and so they like to balance their books by cutting active numbers when the can. Just I thought oh this is the start of having a team of support people and then finding out the team member left straightaway !

[Millidog]

Hi, an OT is a definite. Ours has been great. She visits regularly and has supplied all sorts of aids - shower chair, slide sheets, stand aid, toilet riser seats, toilet frame and a hospital bed. Some of these such as the shower chair are not in use but here ready and she is getting us a motorised fall aid and a rise recline chair. She was referred to us by the physio initially and they work in the same dept and work together to support us and help update gp and refer to other services . Eg referral to wheelchair services etc So would be of great value to you xx

[Millidog]

Just a thought if your go works like ours. We have to send in an e consult so if you're similar you could send a request for further salt, physio and ot to gp and get things moving. I'm sorry to say you're right and being polite doesn't get you far. I have to be very assertive (bossy) eg we were referred to bowel and bladder and I initially got an admin person who said they could do nothing gbut offer 5 reusable pants per year. When I got shirty I got to speak with a specialist nurse and after a strong conversation we gave an appt with her next week. Keep fighting xxx

[ChocolateFaceTeddy]

definitely agree with you you need SALT at every step of the way as it progresses they aren’t fully versed at all keep fighting xx

[Doublereeder]

Mum had about 4 visits from the SALT a few years ago. As she was on a plateau at that time, the SALT said she would discharge her in terms of regular appointments but keep her on the books so as and when we felt she needed her again she was still in the system. Is it possible you could go back to your SALT and as for that Sunflower rather than the need to go back via GP (which is also a waste of everyone's time of an appointment)?

[Sun-flowerwearer in reply to Doublereeder]

Thank you and I’m sure as I have their number That would be the route I’d take in the first instance xx Just me stressing the other day x

[JarvisMarvis]

here here

[messier]

I had the same thing that SALT discharged after the visit. I think in lots of areas in the country the policy is to do an assessment, give instructions and walk off. When you need them again you go back round the circle - with all the delays involved. Personally I found them more hassle than they are worth - especially if your loved one is in a nursing home - because the home will stick to the letter of the SALT's advice (however poor it is as it was in our case) for liability reasons. Which means the resident's own views about what they find easy or difficult are ignored unless you get stroppy as I did and I forced the home to agree to a signed letter removing any liability from them if they choke!!

[David750]

The demands on all NHS departments Sun-flowerwearer are considerable at present so I am not surprised you have been judged a lower priority than someone else. This forces us sadly to have to make a fuss inorder to get attention, so a lot more stress on you the carer. Thinking of you 🙏

[Sun-flowerwearer in reply to David750]

Thank you for your reply… yes I agree and probably at this stage he probably is rightly assessed as low priority. It’s just the fact we know that my husband will need them more and more as time goes on. His speech has almost ceased other than some mornings when he can say a sentence or two…mostly we use sign language..thumbs up and down and spelling boards.

[David750 in reply to Sun-flowerwearer]

Just like my wife (PSP) was, you really need another assessment. Play on his worst days and emphasis the progressive nature of the condition. Also, more particularly, how it is affecting you. Your health is paramount, if you are going to continue to care properly. If you cannot then there will be more involvement by the NHS / social services, and they won't want that. 🙏

[Willowden]

It could be that your SALT does understand PSP but sadly I think it must all be down to lack of funding. I remember feeling horrified when mum was discharged from SALT and OT. However, they were clear that we could refer back in at any point and directly to them and it was done quite quickly. And there were times when mum was stable for many months so an appointment wasn’t really needed. Knowing that they were there if I needed them was reassuring though.

As someone posted above, our current SALT keeps mum on her caseload and rings every couple of months to check in but I can contact her at any point if I need to. She is brilliant and provides valuable support to me as well as mum.

Keep pushing for any support you can get and if they do have to discharge you, make sure you know how to get in quickly.

Have you got involvement from the district nurse? They were great when mum was still at home, visited regularly as things progressed, rang to check in and could refer to other services like getting hospital bed etc. Another good source of support and helped me to feel I wasn’t dealing with everything on my own.

Thinking of youx

[Kelmisty]

We had two trips from the SALT team and then they discharged Mum. Said if we need them to get referred again, so annoying.

[Zerachiel]

Hi, My wife was referred to SALT by her Nuerologist as she was having problems with her speech, from what I understand she is part if a SALT team that specialises in people with neurological disorders.She has been with my wife throughout the journey visiting more when the need was there. She has provided a communication device, assessed her swallowing and provided support on foods and their consistency.

I would ask your Neurologist to refer you back to them.