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Fragrance free caring - Carers UK Forum

Fragrance free caring

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Hi all, hope you are well today.

I wondered if I might ask a question please - I am trying to find any sort of service that provides fragrance free in home visiting care and wondered if anyone might be able to point me in a direction.

The individual I refer to has a complex mix of issues that mean her movement is limited and she spends most of the time in her bed. One of the side effects of the condition is a severe reaction to certain foods and smells. Exposure to strong fragrance can cause hives, swelling, skin discoloration - sometimes for over a week or two, in order to visit I have to ensure all my clothes have been washed in surecare, i wear no hair gel, deodorant etc. etc

Currently her husband is caring for her and doing an amazing job, but the toll on his health from the 24*7 nature of requirement is gradually building. I have tried going through social services, privately etc. and really haven't found anything.

Does anyone have any experience in this area or have any thoughts on where I might look?
thanks very much,
Hi Mark, and welcome. This is a very interesting point. NHS policy used to be that nurses did not wear perfume, but my own Ward Sister used to come in wafting the stuff: personally I dislike it. I don't mind expensive perfume, in a romantic context, and as long as it is not bucketed on, I just loathe the cheap imitations. But in a caring context I agree that it is totally inappropriate, (apart from anything else the better perfumes may well actually work, meaning that they have a romantic effect, which is highly undesirable in a care context) and anyway, it makes me sneeze. Easy solution is to lobby energetically to change policies of social work and personal care providers on Health and safety grounds.
Hi Scally,
Thanks very much for the response.

The husband is the unpaid carer in this instance - apologies if I am posting in the wrong place, I am just looking to find anyone who may have a level of experience in this area - or knows someone who has. He sleeps maybe 3 hours a night, is in his 70s and has his own health problems - I am trying to explore any way of lightening his load before the load lightens him.

The level of sensitivity is such that if even a minor level of scent is breathed in the patient becomes incredibly ill. For example, if I went round and had washed my clothes with a normal "scented" brand 3 months ago, and then washed them 10 times more in surecare (or unscented product) - that would have an effect as the residual scent would remain. The reason for this is the chemicals used in our everyday products are sooo bad for us, the fragile state of the patients health means their body reacts to anything it deems as a risk.

Just to give a little more context.

The root cause has never been fully diagnosed, although the lady in question thinks this stems from statins she was given in the 70s. As it stands the "specialists" diagnosed ME and fibromyalgia but don't really understand the full picture.

She cannot do anything by herself (including lifting herself up, walking etc.) and has not left the 2nd floor of her house for 7 years as she has no way of moving effectively without severely impacting her for long periods afterwards. She requires 24 hour care and the impact of her husband is incredible. A lesser man would have walked away a long time ago.

She is limited to eating boiled broccoli and potato for the main part as she also has severe reactions to foods.
Very challenging situation. Whats your own point of connection?
The general line appears to be this:
"For all HCWs make-up and perfume / aftershave should be discreet."
http://www.nhsggc.org.uk/media/234094/n ... -10-14.pdf

Now, I agree that discreet does not meet this situation of a total allergy, but if the situation is as severe as you say, it is almost totally impractical to deep scrub all staff or other people coming near to the patient, their clothing, and the rest.

If I was being jovial I would suggest that, as the broccoli diet clearly isnt working, maybe she needs to have her meat and two veg!
Hi Mark
Reading your posts a vision of the TV programme 'Silent Witness' came to mind and I wondered if those all over white disposable suits which are worn so as not to contaminate a crime scene would be of any use. Wouldn't help with wafting perfume of course but maybe would stop residue from clothes affecting this poor lady. She obviously needs some sort of specialist carer or nurse who would be prepared to turn up for duty properly cleansed. I don't know where your friend would go in order to obtain such help I'm afraid, but his own needs should be taken into consideration. Has the lady got some sort of specialist involved in her case? Has her condition got a name? What would happen to her if he wasn't there?
All the careworkers that we use leave a distinctive perfume smell in the house that lingers for days. In fact I sometimes come in to feel my house does not smell like my home. I have had to wash cushion covers etc to reduce it at times so I would expect local caseworkers would not have any understanding of this level of sensitivity. This requires an astonishing level of care. I suggest a long conversation with the GP followed with a list of requirements backed uo by the GP so conversations can be had with agencies and private care workers.


Mark, has anyone mentioned the "NHS Continuing Healthcare Checklist" to the person concerned. Google for more information. If granted (it's a bit of a postcode lottery I'm afraid) it would enable the person concerned to have free support at home.