Psycho-social support

Accompagnement du patient

Our psychologist: Julie Pompougnac
Tel: 01 49 81 48 96
Amyloidosis and its treatments can really change patients’ quality of life, as well as that of their loved ones. It can cause difficulty, worry and emotional suffering. Our psychologist offers an open ear to patients and their loved ones either by appointment or as part of the genetic counselling process. Please note that our psychologist can only offer help to French-speaking patients and relatives.

Our social care officer: Agathe Englebert
Tel: 01 49 81 22 72
or her secretary: 01 49 81 42 84
This illness can change patients’ social, professional and family life. Our social care officer is there from Monday to Friday to listen, give advice and information and guide patients through different social processes (care access and entitlement, guidance, returning home). The social care officer can be seen on appointment or visit patients in their hospital rooms. Please note that she can only offer help to French-speaking patients and relatives.
Find out more
On the cardiological ward, our social care officer listens, advises, informs and guides patients through different social processes.
The social care officer and the amyloidosis network team aim to make sure:
  • Patients have access to care (social security entitlements)
  • Patients have access to their rights (jurisdictional protection, help with every-day and professional issues)
  • Patients receive guidance concerning healthcare and medical-social facilities
  • Patients have a way to get home from hospital
The social care officer can intervene on social matters which are illness-related.
Patient Needs
Assessing patients’ needs makes it easier to identify what sort of help is needed. The social care officer is here to answer questions on this topic either in a private meeting or in one of the Patient Education Program group workshops organised by the Amyloidosis Network.
There are numerous facilities and support networks which have experience with patients of different ages, levels of autonomy, locations, family lives, professional situations and means. These organisations help patients to improve their quality of life, as well as that of their family and friends.
A family member has been affected by hereditary amyloidosis, but another relative is not showing any symptoms. This is where the pre-symptomatic test comes in. The pre-symptomatic test is for siblings, adult children and parents of people who have been affected by hereditary amyloidosis and have a genetic mutation. The pre-symptomatic test is also called the predictive test and tells the relative if they are carrying the same mutation as their family member. Carriers are at risk of developing the same illness later on and passing it on to their children. Carriers might never even develop the illness. Identifying this gene helps carriers put in place appropriate medical monitoring and early treatment.
The genetic test is not obligatory and each person’s motivations are taken into account. It has personal and familial consequences which cannot be ignored. For this reason, it is important that patients and relatives ask as many questions as needed to make this decision. This is why it is called ‘genetic counselling’.
After Hospitalisation
After Hopistalisation:
After a patient’s situation has been evaluated, the following measures can be put in place:
The prescription of after-care and education (SSR) in hospitals or clinics close-by
Help at home:
Nurse home visits (medically prescribed)
Kinaesthetic therapy (medically prescribed)
Household help
Meal delivery
Emergency call system
New housing (if absolutely necessary)
Each of these options is partially financed by different organisations, such as:
Social security
Personal insurance
The County Council (for elderly patients)
The Departmental Home for Disabled People (MDPH)
Regional Fund for Medical Insurance France (CRAMIF)
Family Allowance Fund (CAF)
Patient’s Retirement Fund
The French Amyloidosis Association
Various city associations