Ask the Expert - LD Week special

[ldnurse]

Hi everyone!

My name is Glenn and I am a registered nurse for people with learning disabilities (RNLD) and an academic at University of Sunderland. I am also a member of the Royal College of Nursing Learning Disability Steering Group.

I have been a RNLD since January 2009 and have primarily worked in forensic services until I decided to work in nurse education in May 2018. However, a little known fact I used to work for Mencap as a support worker in their supported living services.

I am delighted to be hosting this Forum thread to mark Learning Disability Week 2018.

Reasonable adjustments seems to be the new phrase that is floating around in political circles and the answer to news of premature mortality, increasing health inequalities and access to appropriate health services. We have now had countless reports highlighting the scale of the problems people with learning disabilities face and the same old promises and recommendations to resolve these issues time and time again.

However, how can we reasonably expect health professionals to know what adjustments can be made or even how to make them when they have limited understanding of the impact of a learning disability on the individual? The lack of mandatory training around learning disability awareness is astonishing and if not addressed as a matter of urgency. There is also crisis in learning disability nursing with numbers falling and leaves the question to be answered ‘which health professional will take over from learning disability nurses when they are gone?’

Reasonable adjustments don’t need to be huge and even the smallest of alterations can result in a significant difference. Having quiet or private areas in GP Surgery waiting rooms, access to learning disability liaison nurses in all hospitals or even a simple introduction from a health professional can make a daunting experience into a truly remarkable one.

Also it is important to remember people with learning disabilities have the right to make decisions about their healthcare, even if it is one we don’t necessarily agree with. What we have to be mindful of is the person may need support to understand the complexity of a situation and make an informed decision about their health.

I am happy to answer questions on what could be viewed as a reasonable adjustment but won’t be able to comment on specific cases.

Thanks

Glenn

[frances_is_a_sibling]

Hi @ldnurse Glenn, thanks for this thread - I’m really interested in this topic. Many siblings worry about their brother or sister who has learning disabilities going to an appointment or receiving treatment in hospital because their needs might not be fully met.

I think it can be difficult for family carers to know what reasonable adjustments to ask for. And I think many health professionals don’t necessarily know what to offer families (and would love more training in this). Learning disability nurses provide a vital role here.

Would you be able to talk more generally about the types of reasonable adjustments you’ve seen successfully carried out in some healthcare settings?

[ldnurse]

Hi

I agree that it can be difficult to know what reasonable adjustments to ask for as it is a broad term but for me its very much about an individual’s needs.

Having appropriate plans in place, if appropriate, such as a health action plan (detailing health needs), hospital passport (containing key information), communication aids and behaviour support plan can be very useful in helping hospital staff to know what support a person requires. This can be supported by learning disability liaison nurses who can ensure that any reasonable adjustments are put in place. However, this service is not available in all areas.

Reasonable adjustments in my experience can range from very minor such as having a slightly longer appointment time with a health professional so complex information can be communicated effectively. Alternatively, they can be very complex where an individual may have high needs and require continuous support from staff and this becomes complicated over funding. A person who may need a member of familiar care staff with them during a hospital stay could need a side-ward where available but if on a four-bedded ward this can become an issue when visiting times etc are taken into consideration.

I think for family carers unless they know their rights or what to ask for then they probably put trust into health professional’s who may not know themselves what adjustments to make.

[frances_is_a_sibling]

@ldnurse - I think that’s a really good point - reasonable adjustments can range from very minor to very complex. Some reasonable adjustments (like you say, a longer appointment time) are usually quite straight forward to offer but can make a world of difference. Hopefully as awareness grows, more family carers will feel empowered to ask and more health professionals will feel confident in what to offer.