A Hospital-home Network for the Care of Patients Afflicted with Amyotrophic Lateral Sclerosis in the Lazio Region - Italy

Project location: ITALY
Project start date: September 2013 - Project end date: September 2014
Project number: 2013-021
Beneficiary: Viva La Vita ONLUS

 [2015-006 | 2016-055]

Amyotrophic lateral sclerosis, more commonly known by its acronym ALS, is one of the most serious neurodegenerative diseases. It is a rare disease that usually strikes in adulthood, and causes a progressive and relentless paralysis of the voluntary muscles. ALS patients have to receive invasive mechanical ventilation and artificial nutrition in order to stay alive. While ALS is currently incurable, most of the time the intellectual functions of the brain are left unharmed. Above all it is a disease with a high social and economic impact as it strikes in maturity (at working age), and often forces the nearest relative to quit their job to take care of the patient, who requires continuous, 24/7 assistance.
In the Lazio Region there are approximately 500 ALS patients, 50% of which live in Rome. There is only a small number of hospitals which can competently and effectively take care of ALS patients, and most of them are in Rome. Among them are the Umberto I General Hospital and the S. Filippo Neri Hospital, which look after over 50% of ALS patients in the Lazio Region. Viva la Vita Onlus is their reference organization, which on average takes care of about 200 patients in the Lazio Region, who receive its services completely free of charge.
ALS sufferers'needs are innumerable and require a high level of social assistance. Due to the lack of an effective therapy it is fundamental that the ALS patient receives care from a competent healthcare institution so the symptoms can be clinically controlled, while receiving support from a network which supports them in facing the disease, not only from a clinical, but also from a psychological and social point of view. Unfortunately this cannot be guaranteed on a local level, and families facing the disease often find that healthcare institutions are inadequate and that there are no advisors giving them the right information, and they often complain about a general state of neglect from local healthcare institutions.

The project was created to respond to the requirement of the ALS patient and his/her family nucleus of a support network through concerted actions that can, on one hand, act from a clinical and psychological perspective from both the hospital and the home, and on the other supply useful tools to deal with the course of the illness on both operational and informative levels:
1. In hospital specialist support;
2. Hospital at home;
3. Transport;
4. Information/training services;
5. Coordinating network.

1. In hospital specialist support
The S. Filippo Neri Hospital in Rome is one of the two regional centres indicated by the Lazio region for the diagnosis and care of people with ALS. It is one of the few centres that cares for ALS patients in the Lazio region in a competent and appropriate way. Recently the hospital has created a multi discipline medical team that is able to take care of the patient in all the clinical aspects but was missing a psychologist, which is fundamental to help guide the patient and his/her family on the agreed care route.
The other entity that has a highly specialised multidisciplinary team is the Umberto I General Hospital, also in Rome, which currently follows a third of the ALS patients in the Lazio region. The collaboration between the Association and the Umberto I, sealed by an agreement, started in 2008 with the ALS Centre constitution. Over the years the Viva la Vita Onlus charity organisation has invested many resources to grow this centre through the financing of specialist resources and investing in dedicated research projects.
In both centres volunteers of the Association work by receiving the patients and their families in the motor neuron diseases clinic.

The specialist requirements for the ALS Centres within the project are as follows:
- A psychologist attached to the S. Filippo Neri Hospital
Tasks:
The psychologists task is to guarantee ALS patients and their families that visit the neurological clinic of the ALS Centre support in confronting the devastating impact that this illness has, not only on the patient, but also on his/her entire family nucleus. In fact given the diseases' characteristics, the improvement of quality of life and psychological well being is one of the main objectives.
In particular the psychologist's task is to assist the clinician with the most appropriate and recommended psychological support during the communication of the diagnosis; during the length of the illness, the psychologist needs to manage the strong states of anxiety and tension that the patient will go through as he/she progressively loses control of his/her body, which left to themselves can not only seriously compromise the quality of life of the patient but also cause the distancing of the loved ones who care for him/her; the psychologists role is also very important in helping the patient accept the help of others to improve his/her quality of life. In conclusion, the task of the psychologist is to bring cohesion within the hospital structure amongst the mutual aid groups involved in helping the families of patients in the hospital.
Procedure and methodology:
The psychologist is coordinated by the neurologist responsible for the ALS Centre - Marialaura Santarelli Medical Doctor. On a monthly basis, the neurologist will sign a document attesting that the psychologist has correctly performed his/her tasks and the dates of his/her attendance at the Centre.
The psychologist should be present twice a week during the ALS Centre's opening hours. The frequency of the meetings with the families are every 15 days assuming the minimum number of 10 participants is reached.
On a monthly basis team meetings with all the people involved in the project will be set up at the Association to check on the project's progress and share information so as to put in place synergistic procedures that improve the network.

- A psychologist attached to the Umberto I General Hospital
Tasks:
The psychologists task is to guarantee ALS patients and their families that pass through the neurological clinic of the ALS Centre support to confront the devastating impact that this illness has not only on the patient but also on his/her entire family nucleus. In fact given the diseases' characteristics, the improvement of quality of life and psychological well being is one of the main objectives.
In particular the psychologist's task is to help the clinician with the most appropriate and recommended psychological support during the communication of the diagnosis; during the length of the illness, the psychologist needs to manage the strong states of anxiety and tension that the patient will go through as he/she progressively loses control of his/her body, which left to themselves can not only seriously compromise the quality of life of the patient, but also cause the distancing of the loved ones who care for him; the psychologists role is also very important in helping the patient accept the help of others to improve his/her quality of life.
Procedure and methodology:
The psychologist is coordinated by the neurologist responsible for the ALS Centre - Maurizio Inghilleri MD. On a monthly basis, the neurologist will sign a document attesting that the psychologist has correctly performed his/her tasks and the dates of his/her attendance at the Centre.
The psychologist should be present twice a week during the ALS Centre's opening hours.
On a monthly basis team meetings with all the people involved in the project will be set up at the Association to check on the project's progress and share information so as to put in place synergistic procedures that improve the network.

- Two neurologists attached to the Umberto I General Hospital
The ALS Centre's team is coordinated by Maurizio Inghilleri MD, who is currently the only neurologist structured within the ALS Centre. The ALS Centre sees about 120 ALS patients per year and therefore needs to grow organically.
The patients check up visits are set every 3 months and concentrated in two days in the week. In each follow up visit the patient has the possibility of not only having a neurological check but also nutrition, swallowing, lung and motor check ups.
Tasks:
The hiring of two additional neurologists to the team, specialised for the General Hospital and with accredited experience of the pathology, has the objective of assisting MD Inghilleri in the clinical diagnosis and in the follow up procedures of the ALS patients.
In addition, the neurologists also have to coordinate their actions with the other specialists within the team so as to ensure that the patients and their families receive the help needed that responds best to the clinical and assistance requirements which, because of the nature of the pathology, are in constant flux. The neurologists, in conclusion, will be tasked with coordination between the ALS Centre and the Association to build a protective network around the patient that not only deals with the clinical aspects but also assistance and bureaucracy.
One of the two neurologists will also be tasked with assisting from a medical point of view, the home hospital service.
The frequency of the two neurologists' attendance is 2 days a week during the opening hours of the ALS Centre.
On a monthly basis team meetings with all the people involved in the project will be set up at the Association to check on the project's progress and share information so as to put in place synergistic procedures that improve the network.
Procedure and methodology:
The two neurologists are coordinated by the neurologist responsible for the ALS Centre - Maurizio Inghilleri MD. On a monthly basis, the neurologist will sign a document attesting that the neurologists have correctly performed their tasks and the dates of their attendance at the Centre.
The neurologists should be present twice a week during the ALS Centre's opening hours.
On a monthly basis team meetings with all the people involved in the project will be set up at the Association to check on the project's progress and share information so as to put in place synergistic procedures that improve the network.

A summary of the activities and committed days of the hospital specialists is summarised in the following table:

 

 

Human resource

Hospital

Coordinator

Task

Number of performance

psychologist

S. Filippo Neri

M. Santarelli MD

Diagnostic communication

Stress management

Assistance reception

Mutual aid

100+24

psychologist

Umberto I

M. Inghilleri MD PhD

Diagnostic communication

Stress management

Assistance reception

100

neurologist

Umberto I

M. Inghilleri MD PhD

Clinical diagnosis

Clinical follow up

Doctor in charge of Hospital at home

100

neurologist

Umberto I

M. Inghilleri MD PhD

Clinical diagnosis

Clinical follow up

50

 


2. Hospital at home
The needs of patients with ALS are innumerable and of high social and care needs. The ideal living condition for a patient with ALS is to be at home with assistance from the local health services able to offer adequate and continuous home care: unfortunately this service is offered locally in a rather haphazard way. One of the problems felt most by the families of the patients is the lack of visits by doctors at home for specialized examinations and they would also like to be treated by the same doctors from the hospital where they are being treated.
Often, a visit to hospital for a patient with ALS in an advanced condition is cause of immense discomfort and cost comprising an uncomfortable trip in an ambulance to the hospital for check ups and examinations which if properly organized could be done at home. Unfortunately at this time visits, by specialists at home, are rarely guaranteed by the Local Health Authority.
To satisfy these urgent needs expressed by the families, Viva la Vita Onlus implemented, in September 2008, a new service called ‘Hospital at home' and by doing this they created a service of continuous care for the patient by a specialized team from their hospital able to manage critical situations at home thus avoiding patients having to be admitted to hospital which is a cause of stress, worry and a further decline in their quality of life.
Tasks
The service allows for visits by specialized doctors at home to patients with ALS - whereas the ASL (local health authority) does not have the necessary funds - so that they may treat patients with ALS carrying out specialized examinations and accessing diagnostic information, which otherwise they would have to carry out in hospital. The team of the ‘Hospital at home' uses neurologists, pneumologists, ENT specialists, palliative specialists, oculists, dentists, psychologists, cardiologists and gastroenterologists. The following examinations can be carried out at home: electrocardiograms, vascular examinations, X-rays, ultrasound, ecodopplers, blood tests and hemogas analisis and dental care.
The above mentioned examinations are available throughout the whole area of Lazio Region.
This service has been financed in recent years by the ‘8 per 1000 Tavola Valdese'; however, at this time, the funds have been used in their entirety and now a supplement of funds is required so as not to interrupt this service.

Procedure and methodology:
The services of ‘Hospital at home' are coordinated by the head office of the association.
The services to be coordinated are: the collection of requests by the family or the patients physician; to check whether the funds for the cure are to be allocated by the Regional Health Service and not available from the affiliated local authorities; consult with the doctor of the Association to check that the treatment is really necessary and if necessary put the doctor directly in touch with the prescriber of the request in order to optimize the request; and finally to coordinate the doctors appointment with the patient's family in order to organize the best way and time for the necessary visit at home.
The doctor of the Association responsible for the coordination is the neurologist of the ALS Center at the Umberto I General Hospital in Rome.
In order to access this service the family or the patient's doctor contact the head office of the charity Viva la Vita Onlus. The request can also be sent directly by doctors of centers specialized in ALS who are in contact with the Association.
To have access to this service however, it is necessary that the ASL (local Health Authority) of the area of residence of the patient does not have locally a similar service or that such a service cannot be put into use within a short period of time and that there is a prescription from the doctor with the request.
Every activity carried out at home is rigorously registered in a file.

3. Transport
In spite of the fact that a patient with ALS lives a large part of their illness at home they often are obliged to visit hospitals so that they can be periodically monitored for therapy of serious attacks which need invasive treatment so as to continue to stay alive (operations to the gastric apparatus, to enable them to be fed or for thrachiotomy for artificial respiration).
Unfortunately the national health service does not have transport available for these patients which could permit patients with ALS at have access to hospitals. This creates a series of problems:
- In case of an emergency and/or need of an urgent intervention which cannot be handled at home, the family is obliged to contact by telephone 118 (emergency services call center) who will take the patient to the nearest hospital but not necessarily that which he is usually treated at.
- Once the emergency has been overcome in hospital and in the case that the patient is in a condition to be taken home the family is obliged to cover the cost of approximately € 300 to € 600 for renting a private ambulance.
- In the case of regular treatment in hospitals that are affiliated with the ASL (Local Health Authority) - above all for treatment such as speech therapy and rehabilitation- the local services provided by the town or the ASL (Local Health Authority) do not always have a free service available for patients with disabilities, (buses with a platform for wheelchairs), or the service available is not adequate to cover all requirements. This creates considerable difficulties for their family as they are obliged to ask voluntary services or use their own means of transport, which are often not suitable.
At this time the Association is only able to guarantee transportation with an equipped minivan; in the past it was possible to transport the patient in an ambulance thanks to financing from the ‘8 per 1000 Tavola Valdese'.
Tasks
The transport services which patients with ALS need are of three types:
- Ambulances type A: Ambulance for the transportation of patients with breathing deficiencies and for emergency use, fitted with special equipment and with specialized staff aboard.
- Ambulances type B: Ambulances for the transportation of patients not in need of respiratory assistance but with simple first aid equipment aboard.
- Minivan without basic equipment but with a wheelchair platform.
For ambulances of type A the Association has made an agreement with ‘Soccorso Italia'; for ambulances of type B the Italian Red cross offers it's vehicles and finally for minivans the Association provides it's own vehicles with a platform which is able to lift up to 300 Kgs.
Procedure and methodology :
This service, as for all the services provided by the Association are offered completely free of charge. These services can be provided by contacting the headquarters of the Association on 06 88978670 from Monday to Friday from 9.00 until 12.30 or by sending an email to info@wlavita.org.
This service operates within the lands of the Lazio Region and it's free of charge but only when and where there is no similar local service.
The agreement with both of the above mention organizations has a fee which is lower than the normal price and the cost of every transportation is covered by the charity Via la Vita Onlus upon presentation of an invoice.
Every trip is registered in a file which is kept in the operational headquarters and is coordinated by the headquarters which organize the transport requested.

4. Information/training service

The information and training service is comprised of:
- a call centre for ALS patients and their families who are in contact with the Association;
- orientation interviews within the operations offices of the Association;
- training courses for families and aid assistants/caregivers.

Tasks
- Call center
Two qualified operators answer calls to the 06 88978670 number from mon-fri from 9.00-12.30 on any type of query and information about the disease. If required, more specific queries are dealt with by specialists that collaborate with the Association or by internal services.
- Orientation interviews
Through the interviews, assisted by a psychologist if need be, the Association will make available to the families the experience gained throughout the years in how to approach the difficult road of the disease in the best way possible, giving information on the pathology and its course; preventative and palliative approaches to ALS; specialists and regional centres that deal with the diagnosis and symptomatic treatment of ALS; bureaucratic procedures to complete; coordination of aid assistants/caregivers trained in ALS therapy; services offered by the regional agencies and the Association.
The interviews are also useful for the coordination between regional agencies and the families with the intention of: ensuring the safeguarded discharge of the patient from the hospital to his/her home; supply models of safeguarded discharge; contact the regional centres concerned so as to guarantee in-home assistance; collect complaints of sub-standard services by the families and present them to the expert authorities; create a close collaboration with the specialists of the ALS Centres in the Lazio region.
In addition, thanks to an active agreement between Viva la Vita Onlus and the Patronato CNA Epasa, there exists a help desk within the operational department of the Association to assist in the forwarding of the procedures relative to the verification of Disabled/Handicap status. This activity is part of the aid functions for the families and is assigned within the scope of orientation interview and information.
The interviews will have a frequency of 3 per week and the human resource identified for this role is the person in charge of the internal activities of Viva la Vita Onlus.
- Training courses
From March 2012 Viva la Vita Onlus organises a series of free training and information meetings specifically for the families and aid assistants/caregivers of ALS patients that are in contact with the Association. The meetings are held in the offices of the Association in Via Sabotino 4 in Rome, in a space that is equipped and designed for the training. The teaching is done by doctors and expert caregivers, with the aim of supplying practical recommendations for the in house management of ALS patients. The courses touch on subjects such as neurology, physiotherapy, pneumology, psychology, nutrition, communication, palliative treatments, emergency procedures and the practical aspects of how to live with this disease. The courses have highlighted the need for the families to receive a continuous and direct basic training that allows them to operate in a way that is safe for the ALS person in their care.
With this activity the Association is committed to organising a training session every 15 days with medical experts and volunteers by hiring doctors and caregivers that are experts in ALS treatment.
Procedure and methodology:
Every contact that comes from the call centre is recorded in a personal patient file in which the query and follow up answer or action is reported.
In the same file the individual interviews are recorded in the same manner.
For the training courses, all participants sign in and fill in an anonymous questionnaire on the level of information received and the perceived quality of the professional involved.

5. Coordination network
The coordination network of the project foresees regular meetings with all the people involved in the network project to share experiences and optimise actions so as to make the operations more effective.
Tasks
On a monthly basis all the people involved in the coordination project will meet at the Association's offices with the idea of sharing each other's experiences in a synergistic way so as to optimise the operations-each in his own field- with a shared outlook of both the tools and the experiences.
The direct beneficiaries will interact on the project on a continuous basis as the actions taken are directed at improving their quality of life. To such end the level of efficacy of the actions will be constantly monitored and measured and will be discussed in team meetings so as to be able to make ongoing adaptations and changes.
The meetings will be coordinated by the person in charge of the project.
Procedure and methodology:
All information is collected by the services in the network and included in the coordination meetings so as to make decisions together about action strategies with the objective of improving the overall service rendered.
A minutes report will be issued for each coordination meeting.

This project received a grant from the Nando Peretti Foundation. In 2015, it received another grant from the NPF. In 2016, the Nando and Elsa Peretti Foundation has awarded a grant for the third year.

The general objective of the project is to guarantee that the patients and their families suffering from ALS a network of support which will help them to face the devastating impact that this illness imposes to not only the patient but their entire family.
The specific objectives of this project are the following: reduce the patients and his/her family's level of anxiety with the final intention to help them face, in the best way possible, the whole course of the illness; to avoid families feeling abandoned; offer a point of reference and support which can help them with the management of practical problems; give them the possibility to share their emotions connected to the illness by encouraging relations between themselves and their caregiver; offer a neurological support for the medical aspects of the illness; guarantee medical aid between the hospital and in locally; take advantage of direct contact with the charity Viva la Vita Onlus so as to offer them practical information in the area and about the daily management of the illness; offer training courses to caregivers.
The results expected from this project a closely linked to the general and specific targets of the project. The result expected is to create a protective network around the patient with ALS and their families, which will help them to face the entire period of the illness knowing that they can count on real help.

 

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