Here in Pforzheim, Pádraig had an hour of speech and language therapy, followed by cognitive therapy, followed by three hours of physio, followed by an hour in the robotic walking machine. — At home, there was a meeting with the family, the HSE and the provider of Pádraig’s home care package. Apparently, the famous standing bed has not arrived yet, and there were some discussions about what carers (PAs) can and cannot do, and what is and what is not part of the service agreement. There seems to be a believe that instead of using common sense, each and every detail has to be written down.

There are a few controversial details – one being that carers can call an ambulance or a doctor when they feel this warranted, and without our consent. This is in line with the believe by doctors that it is them who (should) decide how persons should be treated who cannot make that decision themselves. It is in line with the unbelievable case of Ashya King and her parents for whom British Police issued an international arrest warrant after the NHS refused to treat her cancer with Proton treatment requested by her parents, and after the parents had brought her to Spain to receive this treatment.

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In Ireland, the same situation could happen — backed by legislation from the 19th century, including the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871. This by itself is nothing short of lunacy, in my opinion.

Now – one of the barriers to allow Ireland to ratify the UN Convention of the Rights of Persons with Disabilities (CRPD) are those two pieces of lunacy legislation. This is where new legislation around consent and capacity, The Assisted Decision Making (Capacity) Act 2015 (http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/pdf) comes in, which was approved by the Dail last year, but which has not yet been signed into law. A sure sign of lunacy itself if you ask me.

There is plenty of information on this act by the Citizens information Board, the Department of Justice and Equality, and Inclusion Ireland — showing that it includes the matter of decision making in relation to medical treatment, getting rid of the assumption that docs know best and will always act in the best interest of their patients — we know better!

In the meantime, the HSE is trying to do their best supporting Pádraig and ourselves — within the boundaries of lunacy legislation that is almost 200 years old!