What health care teams are responsible for PSP sufferers?

[D0ttieL0ttie]

For those of you in the UK. Does anyone know where PSP sits with health care teams? Is it under the mental health teams or physical health teams?

What social service department should we come under?

[jillannf6]

don't know sorry

l[ jillxxx

[Kevin_1]

Hi DL

Definitely not under Mental Health though a psychiatrist might at times be involved.

An example of this is where there are marked symptoms, to the fore, such as psychosis where a Mental Health Team might become involved temporarily. Though even then Neurology Teams tend to have a Psychiatrist.

So it is across in the Physical Health "Health Care Trust" (Mental Health have their own, separate Trusts).

Within that it depends what units they have. A complex illness like PSP / CBD is likely to have input from a number of different Teams.

First and foremost it would be the Neurology Team or Service.

There should also have been a referral the a Tertiary Neurologist. (Primary Care = G.P., Secondary Care = Neurologist at the local hospital, Tertiary care = a senior Neurologist at a hospital providing even more expert neurology).

Other teams that may be involved from time to time might be ENT (ear nose and throat) for speech therapy and investigations around swallowing for example.

The local District Nurses might be involved for home nursing too).

The Care Commission Group might be involved for funding and providing home care or playing for a nursing home.

Legally there should be a single Care Coordinator (which is likely a Nurse) who most likely resides in the local Neurology Team - Their job is to hold the whole lot together and be a first point of contact for the patient. Despite this being a legal requirement it seldom happens.

Rule of thumb - if there is a problem and you don't know where to go - speak to the G.P.

Hope this is helpful.

Best

Kevin

[D0ttieL0ttie in reply to Kevin_1]

Thanks Kevin. I will use this as evidence when we see the Neurologist on 3rd October

[Kevin_1 in reply to D0ttieL0ttie]

Good luck, ask for a referral to the Neurology Rehab Team too.

But you could just ask the G.P for Neurology rehab. They are the ones with the purse strings, the ones who direct the traffic as it were.

You could telephone PSP Association and speak to your local representative. They might even be able to come along. The ones I have met were seriously able and they do sometimes come to clinical meetings.

Best of luck

Kevin

P.S. Ask the Psychiatrist for the diagnosis. They should not be treating an illness which is not a psychiatric illness. So they might be treating low mood, but if the main illness is PSP it is outside of their competence. Doctors should always stay withing their competence area - golden rule.

[D0ttieL0ttie in reply to Kevin_1]

Thanks Kevin. We sit under mental health because in 2013 Geoff was diagnosed with Fronto-Temporal-Dementia. Geoff then developed Parkinson and was referred to a neurologist for this, who diagnosed PSP stating it is common for this disease to be mis-diagnosed on initial assessment

Having researched PSP all of the symptons that he has are definitely PSP related and not FTD. He has no signs of Dementia and his memory remains intact.

We see the neurologist on 3rd October when I will insist on changing his formal diagnosis and changing to a more appropriate team. I will definitely take your advice and ring them before this date.

Thank you

[Kevin_1 in reply to D0ttieL0ttie]

Yes, its odd, but in the U.K. dementia does tend to come under Psychiatry. However over 65 it is dealt with by specialist Elders Psychiatry. A frontal lobe dementia has a completely different presentation to that of PSP and CBD... Different part of the brain affected...different functionality lost.

[NannaB]

When my husband was first diagnosed the GP immediately referred him to the neuro rehab team. They provided occupational therapist, physiotherapist, speech and language therapist, Parkinson's nurse ( she has taken on PSP patients as well) and dietitian.

On the advice of my dad's social worker, we registered with social services who have helped with some things. I phoned the general local SS office and explained our situation and things went from there. I've no idea what department ended up with us but I have a contact number if we need them. The GP also referred my husband to the hospice for day care help and hospice at home services.

The GP also referred us to the district nurses when their care was needed. They left their contact number with us,

I have 12 contact phone numbers for different professionals involved.

Mental health has never been a part of my husbands care.

X

[D0ttieL0ttie in reply to NannaB]

Thank you NannaB. I think that because Geoff was first diagnosed with FTD we have sat with mental health team. Geoff fractured his collar bone on 18th Aug having fell in the night and I simply have not had any help at all because the Mental health team and physical disability team have been arguing over who funds care. It has now reached the point where Geoff is going into respite for a week tomorrow, because his arm is not mending, due to no-one coming to help me move him and I cannot move him myself with his arm in a sling it is too dangerous. And I am desperate for a break. I think all of this is due to Geoff still being under the Mental health team. I will tackle this once my batteries are re charged.

[NannaB in reply to D0ttieL0ttie]

You definitely need a break. I hope you manage to enjoy it and come back ready for the battle with the professionals.

X

[Debbieann]

sorry can't help, we don't have any 'team' only the hospice, we did go to memory clinic once, they wanted to treat him like he'd got Alzheimer's! I wasn't happy! I think PSP totally different and should be under neuro, but what I know!! All I know is I'm more concerned about his mobility than his memory!!

hope you get things sorted, you'll be a better woman than me!!

Debbie xxx

[Lizzie34 in reply to Debbieann]

What is PSP?

[D0ttieL0ttie]

Less of that last sentence.

Everyone suffering with and looking after those with PSP is special.

Why?

Because they are here!

Just signing up to a page like this means that you have strength and are amazing. Take care xx