DOMINIO MONITOREO Y EVALUAR

PALS2 (male, age 39, tracheostomized, quadriplegic, diagnosed 14 years ago, totally aphonic) and his wife CALS2.

C= We opened the ADI (district domiciliary service), but we only use it because of ambulance free transport.

P= (writing on his electronic communicator) We don’t need district nurses to come here.

EMERGENCY SERVICES

Emergency services in Italy are organized in a quick intervention ambulance team with a national phone number (118) that can be called by anyone who is facing an health emergency. After a first telephonic triage a nurse decides which colour code to assign to the call. This can be:

• white code (inappropriate call, refer the patient to his or her GP),

• green code (not life threatening condition, send a simple ambulance to transport the patient to the local hospital),

• yellow code (not immediate risk of death, but serious condition, send an ambulance with a specialized nurse to treat first problems and then take the patient to the hospital),

• red code (immediate risk of death, send an ambulance with an emergency team with physician and nurse)

In the local hospital patients are admitted in the Emergency and Acceptation department (A&E). in that setting if the patients conditions are life threatening they are seen by an anaesthesiologist-resuscitator that decides the appropriate treatment. Because in Italy advanced directives are not recognised by the law if a patient arrives at the A&E unconscious it is up to the physician to decide if undertake cardiopulmonary resuscitation or tracheal intubations. This is a major cause of concern for those patient (usually with motor neurone disease) who decided not to be resuscitated in case of acute respiratory insufficiency.

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The following quotations from the interviews testify difficulties faced by the families and patients who participated at our interviews about this issue.

CALS8, wife of PALS8 (male in his 70, diagnosed 9 years ago wheelchair bound, totally anarthric)

C= my husband doesn’t want to be tracheostomized at all. But he’s scared that once in the hospital they could do it against his will. For this reason we had to discuss one full day because he didn’t want to go to the hospital when he had an aspiration pneumonia(…) One day, it was Saturday, he had a persistent cough, fever and was breathing badly. He refused to go to the hospital because he feared that they’ll put him a tracheostomy (…) in the evening I was very scared because of the incoming night. I called our sons to convince him to go to the hospital but he didn’t consent to it. (…) he did not even want to call the doctor on duty for the general practise, he was really terrified. His cough was continuous and shaking. Fortunately we called this doctor and he was very good. He said he needed to go to the hospital, but reassured him that being conscious now one could ever do something against his will. at the end we went to the hospital.

Another similar situation was testified by this ALS/MND patient completely impaired in his speech, but strongly determined not to be tracheostomized.

PALS5, (man in his 70s, quadriplegic, aphonic, on a wheelchair. He tries to communicate using a computer keyboard, but is very slow. He is a retired doctor. He wants us to read his living will form that had been filled with a notary. He asks us to use its content for our research)

P= with this Living Will I affirm that I am aware to be affected by the motor neurone disease. I know that I can have a respiratory arrest at any time. If this happens I do not want to be resuscitated and I do not want no invasive ventilation, nor a tracheostomy. I ask to the emergency team that could be called in case of an acute respiratory insufficiency to avoid any life sustaining treatment on my person. This is my will and I am determined to obtain what I desire for myself even though this is not recognised by the actual Italian legislation (…)

Another cause of complain in our participants sample was due to the organization of the emergency departments.

When a totally paralyzed patient arrives for an emergency there is the risk to be treated like a not physically impaired person. This implies the risk of being let on a stretcher for a long time with a high risk of skin damage and symptoms due to immobilization.

PMS1 (male, age 53, diagnosis of MS 18 years ago, quadriplegic, using NIV in the night, CMS1 his wife):

I= what happened when you had to go to the A&E?

C= it was because of respiratory troubles in the night: I called the emergency because he was not breathing (...) they came quickly and took him to our local hospital where they are not used to treat neurological patients (…), that was my fault, I talked to the people of the ambulance, but I could not convince them to drive him to the S. Luigi hospital, where he’s well known.

P= it was Christmas Day and I had to spend the whole day on the stretcher! It was terrible and I can not describe what happened to my skin…

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Organization can be critical when a physically impaired patient is to be cared for in the emergency department also because they are structured to face acute events, but there is a lack of coordination with the domiciliary services. Emergency doctors are invited to keep these very ill patients at home, but if therapeutic options do not work and patients must go to the A&E there is the risk of being seen as an inappropriate admission in the wrong setting. This can cause problems as reported below

CMS3, wife of PMS3 (male, age 46, blind, quadriplegic, muscular spasticity, fed by PEG)

C= (…) I lived again the drama that happened when he was in coma for his pneumonia. The paid carer was at home with him; he called me at work telling me that my husband was breathing badly, with secretions out of his mouth. I told him to call 118 (emergency). I arrived home while the doctor was visiting him.

He said that he had high fever and prescribed an antibiotic. He added that fever would have gone and that it was not useful to go to the hospital (…) After 5 days of fever ( I’ve never seen him so bad), one night he started vomiting. He vomited his soul! What a shambles. At that time in the night I could only call the on call service of the NHS. He had fever, his temperature was 40.6°C. the doctor on call did not come to visit him at home, he just told to wait the effect of the antipyretic. After half an hour he called me back. Fever was 40.5°C. He said it was going better, just to put ice on his forehead. (…) I really felt alone! I had to clean vomit, care for him, I spent the whole night with thermometer in my hands…(…). The day after we went to the hospital with our GP’s prescription for an emergency admission . Another terrible quarrel. The A&E doctor looks at me and says: “What are we going to do with your husband? Anytime he doesn’t feel well you bring him here?” I show him our GP admission letter. He answered me that I had to convince myself that my husband was terminally ill and so I did not have to take him to A&E, it would only be worst for him for high infection risks. Anyway, they put him in a small dark room. Time passes and nothing happens. I wanted them to do some exam to understand the origin of fever. I was scared of pneumonia. They told me I wasn’t supposed to teach them their job. (…) they didn’t have any available bed, he had to stay on the stretcher.

They told me to look for another accommodation outside the hospital. The day after I called S. Luigi hospital, the social assistant… nothing. No one could help me (…).

Again lack of coordination can be a cause of bad service for patients who need the emergency service being affected by a chronic condition

PMS7 (Male, age 73, diagnosed 25 years ago. Wheelchair bound, anarthric, cognitively slightly impaired) CMS 7 his wife.

C= we had many problems with the hospital and emergencies services because of lack of coordination. We had an urologist who came home for catheter substitution who claimed that we had to be cared for by the urologists working in the hospital where we’re in charged. Of course the latter said that we already had the former… during that quarrel we spent two years with my husband who yelled in the nights because of bladder pain. We called the emergency and told us that this was not a situation that they could manage. What are they there for?

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Sometimes informal carers are more experienced than professionals working in A&E in the management of particular devices. In the following report this old carer was used to manage his wife’ DuoDopa infuser connected to the PEG, but when they had to go to the A&E he was not allowed to stay with his wife and nurses did not know how to use that pump.

PPD5 (woman age 78, cared for by her husband -CPD5- at home)

C= Emergency department of our local hospital now is fine. It was not since like this few years ago. (…) We are usual customers (laughing) We had to go there twice in last month: once for a bronchitis, the second time for a stomach pain.

The problem was that they didn’t allow me to stay close to my wife and I’m the only one able to manage her duodenal pump, so the alarm biped and… they should let me stay, I know there’s a law for it, but they said that relatives were not allowed…

Finally for patients living alone even the call to the emergency can be a problem, like in this case where the patient is physically impaired and spends the night alone. A paid carer in the evening put her in bed and then comes back in the morning.

PMS4 (71 years old woman diagnosed 42 years ago. Quadriplegic, wheel chair bound, lives alone helped by paid carers)

I= what if something happen when you are alone at home. Do you have someone you can call?

P= yes, my cat! (joking).

I= have you ever called emergency?

P= once I did it, but they didn’t come. I was alone in the night and had an acute diarrhoea due to a mistreatment that I received during a physiotherapy session.

So I called the emergency and the doctor on call replied me that it was a kind of antibiotics overdose. He suggested me to wait until next morning and then to go to the hospital for controls. So I did. But I spent the night alone, with constant diarrhoea (…)

Other services: physiotherapy, speech and language therapy, respite facilities PHYSIOTHERAPY AND SPEECH AND LANGUAGE THERAPY

The physiotherapy (PHT) and speech and language therapy (SLT) services are provided by a private non profit organization (Don Gnocchi) in collaboration with the NHS.

These services are activated by both GPs and hospital specialists and offer packages of interventions at home as courses of 15-20 treatments that are to be renewed time to time. Being these services very important for both symptom control, prevention of complications and maintaining of physical mobility they are strongly required by patients. Unfortunately many participants complained about the lack of continuity of PHT and SLT claiming that, when many months pass between two courses they lose the advantages of the previous intervention.

Some participants recognised the benefits received from the PHT and SLT provided by the Don Gnocchi

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CPD1 wife of PPD1, man 80 years old, diagnosed 9 years ago.

C= we had a physiotherapist who came home for 15 sessions from Don Gnocchi service. He also called the SLT, she’s very good. It helps him swallowing water.

PALS3 (male, age 60, on a wheelchair, severely dyspnoeic, diagnosed 5 years ago. On NIV at home) and his wife CALS3.

P= I have a PHT coming once a week for physiotherapy sessions. She comes from Don Gnocchi service. Well she a nice girl, she makes those nice massages, lovely.

C= well, the neurologist said he has to do passive PHT. She has to work on his limbs. It’s a good service. The physiatrist comes, prescribes a course of sessions and the physio comes once a week. Renewal is almost automatic.

PALS8 (male in his 70, diagnosed 9 years ago) wife CALS8

C= we are very satisfied of the Don Gnocchi physiotherapist service. They come here regularly and courses are renewed automatically. They could provide speech therapy as well, but he doesn’t want it anymore

This patient lives in a village in a rural area outside the city of Turin where the NHS district directly provides PHT and SLT service. She was very satisfied with it

PALS7, (woman 60 years old, diagnosed 12 years ago)

P= we are very lucky in this area. Our local NHS district provides everything we need, very quickly. We have a superb FKT service

Other participants though reported less satisfaction about this kind of service.

Main reason of not satisfaction was lack of continuity of the home PHT service

PMS1 (male, age 53, diagnosis of MS 18 years ago, quadriplegic, using NIV in the night)

P=Physiotherapy: they should do it at home, maybe just a couple of time per week ,but continuously.

PMS2 (male, age 43, quadriplegic, can only move his neck, totally dependent in ADL), CMS2 his wife.

C= (about PHT and SLT) we have both the services from Don Gnocchi. The problem is that they come and they are very useful, only for a course of about 15 sessions. After that we have to renew the request and obtain the authorisation. It takes months.

P= it’s a plague! It should be automatic.

C= if you know that a young man needs passive physiotherapy… you can’t think that at the end of the course he’ll walk again

P= I’d love to have PHT in a swimming pool, they say it would be very helpful for my symptoms!

C= yes, and they have the pool at the Don Gnocchi centre. But you know what?

If he goes there, there are physiotherapists to treat him in the water, but no one will take his napkin off! And because I must go to work I can not accompany him there. I can’t lose other working days.

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P= I need a person with me 200% of the time, I can not do anything by myself being so paralyzed . For this reason I had to refuse admissions in places where they could do water gym.

PALS4 (male, 61, quadriplegic, on a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago) and his wife CALS4

C= physiotherapy is a problem. It’s very useful, but Don Gnocchi provides only one course of 15 sessions and then there’s a hole of 4 months. We have to pay for another therapist to have a continuous service.

PPD5 (woman in her 70es wheelchair bound.) and her husband CPD5

C= physiotherapy: we have just finished one course from Don Gnocchi domiciliary service. Now, to renew it I need a visit from the physiatrist. I went to reserve it and they gave an appointment for January 2008 (the interview happened on June 2007). And after the visit I’ll need the authorization from the NHS district. And after that there will be the Don Gnocchi waiting list…

Furthermore she needs more speech therapy than physio. She requires it to improve her swallowing. But she should receive it when needed it, not one year later!

Other participants complained about the efficacy of physiotherapy itself because they did not obtain the expected results or because they were not satisfied by the relationship with the therapists.

CSM5, mother of PSM5 (male, 49 years old, diagnosed 24 years ago.)

C= he had a physiotherapist who came to treat him from Don Gnocchi, but it wasn’t helpful, it didn’t change his conditions at all, so… There’s nothing that works.

CMS6 wife of PMS6 a 53 years old gentleman EDSS 9, fed by PEG, almost totally dependent in the ADL

C= physiotherapy was provided by Don Gnocchi. First courses were fine, but this year they sent to us a physiotherapist who wasn’t reliable at all. He was always late, his treatment were very light, he just moved up and down his forearm and his leg.

P= he called it physiotherapy! (laughing)

C= so I complained to the service, but they said they couldn’t change him. Since then he’s not doing any physiotherapy.

Other participants did not receive the home physiotherapist service and discussed about other bad experience faced when they used territory based facilities

CPD3, wife of PPD3 (male in his 70, diagnosed 27 years ago)

C= he did physiotherapy, but not at home. I had to accompany him to the PHT centre and I had to pay a taxi for it. I applied for taxi free coupons three years ago. We are still waiting!

PPD4 (woman, age 60, cared for by her husband –CPD4- at home, in DBS) C=We went to do speech therapy to the local centre here, but it didn’t work.(…) We would require domiciliary physiotherapy and speech therapy.

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P= I think that a domiciliary physiotherapy would be very useful. If I have to go to do sessions to the physio-centre I feel down before leaving my house. When I arrive there I’m not able to do anything. It becomes useless. It’s also a mental difficulty. When you’re not expecting it, this disease takes you in. (…) you feel frail and you fear the things you have to do.