General experience

In this section the following the analysis of the following aspects will be presented:

• number of patients severely affected by neurodegenerative conditions potentially eligible for a SPCS

• available services

• comments about a new SPCS Number of potential users

The potential number of people severely affected by ALS/MND, MS and movement disorders living in Turin area can be estimated by prevalence data of the specific

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conditions, even though there is a lack of information about the advanced stages of the specific diseases. Participant were asked to report the number of patients with the diagnosis above indicated and to define how many of these could be considered in advanced stage and, therefore, potentially eligible for a new SPCS.

Data were different depending on the dimension of the centre were participants were working for and for the different diagnosis. Data are not meant to provide information about the prevalence of the disorders, nor to establish how many people severely affected by these conditions were living in Turin or its metropolitan area, but to consider the proportion of people in advanced stages compared with the overall caseload of the involved centres.

MS specialists reported about 10% of their patients to be in advanced stages

EMS3: ” I’m the director of the MS centre in this hospital. We can estimate in 80-100 severely affected MS patients cared for by our centre. We must define what we mean for it, but it is about 10% of all our patients”

EMS1: “ we can add 15-20 more MS severely affected patients of our service”

EMS4: “it’s hard to estimate for the MS. I do not know if we lose the most disabled ones, usually we see them one or twice per year. I think that bed bound patients seen in our service are about 25-30”.

ALS/MND report a higher proportion of patients being in an advanced stage and not able to go to the ambulatory

EALS1: ”An estimate of ALS patients cared for by our tertiary clinic can be of 70-100. About 25 are the ones that would require a domiciliary service”

Professionals working in the respiratory centre report higher numbers of ALS\MND patients with respiratory problems cared for by their hospital service

EALS2: ”if we consider both patients in non invasive and invasive ventilation we have about 100, only ALS. We have a high turnover”

PHT: “in relation to the dimension of our service it's a big load”

Movement disorders are much more prevalent and very difficult to predict in terms of potential SPCS users. This neurologist working in the tertiary clinic for Parkinson’s disease reports:

EPD2: it's difficult to say because the worst ones are lost at follow up. As long s they can't come to the ambulatory we don't know what happens to them. But compared to the numbers that my colleagues are citing now I fear that for all extra pyramidal syndromes, considering also demented patients, we should imagine a number 100 times higher. I'd estimate hundreds of patients eligible for a home care service in Turin area”

Available services

When asked about the availability of specific services for people severely affected by neurodegenerative conditions in Turin city and metropolitan area, professionals described an heterogeneous picture.

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ALS/MND though being a rare condition seems to have a better network of specific neurological services above all aimed at supporting advanced patients at home. In spite of this transports and social benefits are difficult to obtain

EALS1: “For home bound patients we can provide a domiciliary service with neurologists than go and visit patients in their homes more or less each 2 months. No transport services for ALS patients is provided. Social benefits are difficult to be obtained. Our neurological service is free of charge for them, but they need paid carers and can receive social benefits only if very poor and lonesome. They are charged for everything they need“.

This is not true for movement disorders where neurologists are concerned about the quality of the assistance provided by primary care alone

EPD1: “I don't know what happens when patients are at home: how are they managed, is the carer able to recognize complications? Are GP's able to manage it? It happens that our patients go to A&E of other hospitals for bad dyskinesias, maybe because they swallowed 5 tablets instead of one and their therapy is completely changed when it would have been enough to wait the drug effect.. and consequences are worst!”

EPD2: “I think that a good domiciliary service can improve many outcomes for PD advanced patients. One aspect can be PEG management for those patients using DuoDopa continuous infusion via PEG. We had local complications 100-1000 times more frequent than other experiences in Northern Europe. We think this can be due to a better home care service provided there... this is a palliative intervention because we don't have any therapy that can improve survival in PD”

For MS there is no specific home care service except for the transport service provided by the local patients association that is seen very positively by professionals

ESM4: “AISM ( patients association) provides a transport free service to MS patients. This allows also very impaired patients to come to our centre to be visited. This doesn't happen for other categories of patients.

When asked about their feelings about the quality of services available for their patients MS specialists show frustration and impotence

ESM2:” we have structural limits, but specific projects aimed at this aspect should be enhanced. A good domiciliary service ease our job. Patients are more satisfied, better managed and more compliant with therapy (…)I feel impotent.

There are structural limitations. We do our best, but….”

Even respiratory team report frustration about the impossibility to provide telephonic support to domiciliary patients

EALS2: “most problematic patients have my personal cellular number (I must say that in our service this is not always seen as positive). But usually they have to call here the service and the secretary office isn't always on call, just during the normal office time.”

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Some participant discussed about lack of instruments and adequate education in their hospital based teams about specific issues very common in palliative care like, emotional support, supervision meetings or team work strategies

PHT: “we don't have any clinical multidisciplinary supervision, we just have a project for us physiotherapists”

SLT:” we shouldn't answer to our patients’ emotions and deep questions just with our feelings or emotions. But here any operator has its own background and education, we don't have common pathways or guideline. It's not easy”

EALS2” these are hard experience that we have to keep inside. We don't have any form of meeting among ourselves because of lack of time”