General Discussion

Hi, can I ask if people are familiar with the Oliver McGowan training which is mandatory for NHS etc staff? If so, do you think it has assisted staff and informed services and environments? 

Are accommodations realistic options? Do you think your clinical needs are prioritised over how you experience health care?

Thank you

Hi Shimmering Unicorn, 

At Shrewsbury and Telford NHS Trust they have been rolling out Oliver McGowan training,  may even have completed by now. (I was treated there 3 years ago.) From my perspective - as a past learner in an organisational context- face to face training delivery has the potential to be far more effective than the online training option , since it allows for questioning,  answers, further explanations and the recounting of an individual experience. The Medical Director also trained in patient centred care approaches and has been implementing them since.  All these are positive developments. I think if staff have good listening skills and an open mind, that helps. Autistic presentations are many and varied and busy staff really need specific needs to be identified beforehand. As to whether reasonable adjustments can be met in practical terms,  care practitioners rather than neurodivergent patients would be best placed to comment on what the barriers might be. I guess that carrying out a needs assessment in advance helps,  and it is to be hoped that the care teams can cater for those needs upon admission. 

Thanks for your response. I know the training is in two parts, the first being on line and the second co-delivered by a trainer with a learning disability or autism in face to face sessions.

I always wonder how training that becomes mandatory with a massive roll out, ensures it fulfills it's purpose in a meaningful way and guards against becoming a tickbox exercise.

I agree that people's needs, tolerances and preferences can't be pigeonholed or have one size fits all responses.

I wonder how many have a needs assessment and then how that translates to accomodations?

The 'flag' system for health records has been mentioned but again I am unsure that this is widely known.

A pal eventually met a GP who was unfazed by his needs and struck up a brilliant rapport. This one GP and the  accomodations they facilitate is the only way that pal was able to engage with health services.

Cheers

Hi, i am new to this forum. I was diagnosed with breast cancer in August, before I could get assessed for autism. I am really running into the limits of autism now, so I wrote an email to the breast unit to explain my difficulties. They organised a neuro diversity nurse to accompany me to appointments, and they also signposted me to the health passport on the national autistic society website. That has been invaluable, because it is something you can give to health professionals at the start of your appointment. It helps you advocate for yourself, rather than getting shamed or judged. I would recommend it to anyone assessed or self-identifying as autistic.

Unfortunately being in Ireland there is no such support for me here, the oncology staff do not understand my autism and sometimes look at me like I have two heads. They don't know how to deal with me, or even understand meltdowns. They offered a visit from a mental health nurse 6 months ago while I was an inpatient (also breast cancer) but nothing came of it.

Thanks, ZenHen, I didn't know about the NAS health passport and think that could help me in future  

  I am sorry to hear that Why don't you download the health passport and start taking it along anyway. You may be pleasantly surprised. It is in their interest too to keep you regulated. The difference has been day and night for me. Much less chance of meltdown or shutdown, and staff have been super supportive. This is the link: www.autism.org.uk/.../my-health-passport

Sorry, I have never heard of the health passport, and do not live in the UK so I don't think that is an option, but thanks for the suggestion.

Hello ZenHen 

A warm welcome to the online Community from me - what a cracking and helpful 1st post - thank you.

The Community is divided into cancer specific groups and to "meet" others in the same or similar circumstances I would advise you to join our breast cancer group - here's the link you need:

Breast cancer forum 

Just click on the link I have provided for you and once the page opens up click on "join" on the black banner at the bottom of the page. Once you have joined the group you can introduce yourself in the "New Here - Say Hello" section.

If you need any help in navigating the Community, please do come back to me.

Best wishes - Brian.

Hi. I have not looked at the actual passport but the idea is that you have documented your needs etc and this handy couple of pages that you print out can be handed to practitioners at appointments and during a hospital stay can be kept with patient notes at the foot of your bed etc.

I appreciate that it is an initiative by NAS endorsed by NHS England but the principal is universal. 

You could look at it, adapt it or create your own version.

I know in itself it would not engender the much needed awareness, understanding and accomodations but ... it is something tangible you can point to and place in people's hands. Your words would be written and there at times when you are less able to be patient and eloquent and tire of repeating information.

It could be the start  of the many conversations it would seem are necessary in ROI and health 

Take care