Alport Syndrome

Messages to healthcare professionals

The people we spoke to had several messages for healthcare professionals. Many, like Kevin and Steve said they valued the NHS and were grateful for the care they received, particularly if they had a transplant. Some recalled examples of excellent care, such as during pregnancy (antenatal care), and having a good relationship with their doctor. People also made suggestions for improvement. 

Many people acknowledged that Alport Syndrome was a rare condition and appreciated when their doctor had some understanding of it or had taken the time to find out about it. People spoke about having good relationships with doctors who were knowledgeable. Debra felt it was a doctor’s duty to try and research or read up on Alport Syndrome if they had a patient with it. Richard X said he was pleased that more junior doctors seemed to be more aware of Alport Syndrome than in the past. Angela felt that it would be useful if doctors were aware of Alport Syndrome when making a diagnosis.
For Steve X it was important to have doctors who listened to him. Robin felt that doctors shouldn’t assume that a patient knows and understands everything, and that they should be willing to explain things again. People often felt they knew their own bodies best and wanted to be taken seriously if they had a particular symptom or side effect. Others valued having continuity of care.
Debra, Steve and Lucy felt it was very important for patients to be fully informed. Lucy didn’t want to be protected from the truth and wanted straight answers. Patrick said “medical professionals should be ready to completely and fully inform the patient on what he's got; what the ramifications are.” Others said that they wanted to know if their kidney function tests showed any changes or decline, and for this information to be shared with them.
Several female ‘carriers’ said they wanted more information for them specifically. Alison, Donna and Karen wanted more attention to be given to the female side of having X-linked Alport Syndrome. People who had rarer forms of Alport Syndrome also wanted more information tailored to their needs. Michelle felt there was a lack of information on autosomal recessive Alport Syndrome for her children (see also Alport Syndrome - getting information).
For some people, like Steve, Lucy, Kevin, Jago and Wilf, it was important to talk to others with Alport Syndrome and to deal with the emotional and psychological effects of living with it (see Alport Syndrome - getting information). Support was vital, whether this came from family and friends, through counselling, or connecting with others in the same situation.

See also: ‘Alport Syndrome - getting information’, ‘People’s attitude to Alport Syndrome and their outlook for the future’ and ‘The emotional side of living with Alport Syndrome and where people found support’. 


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