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Original poster

Severely matted hair...

152 replies

Becca19962014 · 03/02/2018 12:38

Please don't judge.

Due to physical and mental health problems my waist length hair has become completely matted. It hasn't been washed, nor my body in years, it is so foul and disgusting that I can't even get a hairdresser to see me.

I cannot wash it and have no money to pay for someone to help me. My last hospital admission I was told to shave it all off and accept I'll never have hair as I cannot care for it and cannot afford help.

My disability has cost me everything. It took years to grow my hair but gradually I could do nothing at all with it.

It's now at a point whereby its matted at the back and the top is matted into the back. I bought a big detangler hair brush after I was told to use one on it before (but it was for thin hair not thick like mine) and back brush it with dry conditioner by an OT - that was when it became totally tangled and it just got worse. I spend a lot of time in bed lying on it and must wear a medical device which sits on my hair for at least twelve hours every day.

I spent my childhood being forced to have an almost shaved head. I was suspended more than once because of it and my family (not that I have a lot to do with them) bullied and mocked me for have disgusting long hair when I left home and grew it, even though then it wasn't anything like it is now. My experience of hairdressers is having my wishes ignored and having combs yanked through my hair which resulted in bald bleeding patches as they refused to accept a comb has never gone through my hair.

It's been years.

I've no idea what I want from this thread. I went to see a hairdresser this morning, literally to see them, to speak about it, not touch, and they literally laughed and said it was too disgusting to even touch and told me to just shave it myself at home, I couldn't have a wig as I live somewhere very windy, charged me for the advice and send me on my way. They were obviously taking photos of me and I'm really worried what for. I wish I'd never gone. There's no other hairdresser here and I'm feeling really upset. I can't really put into words how hard it was for me to go there and now I'm really ashamed.

So other than completely shaving my head, any ideas?

OP posts:
tupck · 05/02/2018 09:27

Hi I had this problem a few years ago when I was also depressed it's actually a very common problem and nothing to be ashamed of the matting is the same process as dreadlocks but you don't style it the same, when mine got like that there wasn't a comb in the land that could remove it cut the matting out just the matting if it is matted at the roots then unfortunately you will have to shave it but there are brilliant and affordable wigs you could try if that's something you'd want to look into if you do want to try and manually remove it you could try lots of baby oil to make the hair slippy and it should come out but by bit but this is a long and hard process I really hope you get the help you need op

MeadowHay · 05/02/2018 19:05

Becca It sounds like you are not getting all the benefits you're entitled to, because it sounds to me that you should be getting High Rate Care and High Rate mobility. I know you said you're in the DLA/PIP changeover, I'm not sure what stage you're at but I'm hoping that could actually be beneficial for you - it's not uncommon for people to move on to PIP and actually get better awards than they did previously (I was one example of this - went from low rate care on DLA awarded by tribunal to enhanced daily living and enhanced mobility when I applied for PIP). That would be a significant extra chunk of money for you and could really make a big difference. There is a Bury-based organisation called Fightback that are really good and could help you in a battle for the correct PIP/DLA award. They have very, very high success rates and give out free advice, they also have a very informative website.

joangray38 · 05/02/2018 20:40

Hi my hair was terrible knotted after a month lying on it intensive care and I then couldn't wash it as I had stitched up the back of my head. I used a baby brush and comb and children farm detangling spray which has tea tree in it. If I were you I would cut your hair so it is a manageable length, get a baby brush and comb and children's farm detangling spray and start from the ends and work your way up. I would also take multi and hair vitamins as your hair doesn't sound healthy plus it might grow back quicker.

barefoofdoctor · 05/02/2018 20:49

Flowers OP.

silver2011 · 05/05/2018 21:59

That is terrible they should come out and see you not cut pip off . Am so sorry the hair dressers have not behaved professionally at all . Please tell the benefit people you can't make it to medical they can't expect you to live on 76 pounds a week . If you have rare condition OT should help you . People on here will support you

MrsDoylesTeaBags · 05/05/2018 22:38

Hi Becca, I cam here to give my usual advice of cutting your hair to sholder length which i still manageable, you can still tie it up but feel 'feeemenine', use oads on conditioner and start combing down from the tips woring your way up inch by inch. An AfRO Carribean / dreadlock salon would be much more amenable as they are used to getting through thick / loced up hair.

But it seems like your issues are much deeper, I cannot offer practical support but you are in my thoughts. From my own experience I really do understand how much appearance links to mental heath and vice versa, I really do hope you find a suitable resolution. Please know you're not alone, you are in my thought and I wish you well Flowers

Original poster
Becca19962014 · 05/05/2018 23:42

I hope this reply makes sense, I'm exhausted with various issues at the moment but didn't want to not reply!

silver I did get pip though a lot goes on other medical needs (long story).

mrs thank you.

I've since posting this been working with a detangler spray and brush. I've removed as much as I can and though much is still matted it's not as bad as it was and I bought an inflatable sink and put my hair in that to at least give it a soak (sounds wierd I know!) I can't get to a dreadlock type salon, nearest is four hour round trip which is impossible.

Unfortunately I got scammed by an organisation which was linked on this thread (it's since been removed) - that was totally my fault and I should have checked them out.

OT requires referral which means I must be well enough to travel to hospital appointments which I'm not, paying for taxis and hotels (necessary as I cannot manage my pain well enough to travel there and back in a day) and then need to pay for medical reports to prove my conditions, which is hundreds of pounds. It'll also be at least a year before I was seen by consultants, my condition deterioates so that's not really an option.

OP posts:
GlitterGlue · 06/05/2018 00:00

Your gp can refer you to OT, or you may be able to refer yourself via the council. A diagnosis isn’t required for an OT referral so you don’t need to pay for medical reports.

Original poster
Becca19962014 · 06/05/2018 00:16

Sorry I didn't explain myself very well. You're right a GP can refer but they won't do anything without written reports for conditions from consultants which I don't have. They won't accept reports from GP they must be consultants/others from secondary care e.g. Physio, cmht which I don't have access to.

Self referral would require the same.

Here they won't assess without diagnosis, they won't just take someone's word or their GPs that they're disabled. I don't know how it works elsewhere but here they need proof conditions are long term and what treatment has a been completed and worked or not, my first assessment I'd not seen a physio so they wouldn't assess as they assumed physio would make me more capable (it made me worse which it can sometimes do) then I saw them again and they needed letters saying that.

OP posts:
BlankTimes · 06/05/2018 00:34

Your PIP decision letter should list the things you have difficulty with, like self-care. what you cannot do and what you need prompting to do etc.
How long is your PIP award for, (see the decision letter) that will tell people your conditions are not short-term.

If you have enhanced mobility PIP, you may be eligible for a care assessment by a team who do home visits.

jacobsgirl · 06/05/2018 00:44

I'm sorry you're having such a hard time ,

I actually had an issue like this myself however it was only a couple of months and I luckily managed to sort it myself with a brush n load of brushing it underwater / with conditioner

I know you'd said about wigs not going to be an option but there are actual a lot of really sturdy ones now - they aren't what they used to be

Lace front wigs or wigs you can get sewn in might be options ? If you had a clean slate e.g. Shaved or very short hair you could get a wig expert to help you fit it etc and think about how much easier the upkeep would be when you can see it all ! Take it off to clean it etc !

I really hope you find a solution I'm sorry I'm not much help

Hugs

Original poster
Becca19962014 · 06/05/2018 00:53

PIP is until 2022 but I've not scored enough in any areas for it to be directly useful for any assessment (I got enhanced because they added all the points), OT looks at each section and the guide says I need 8 or 12 (so maximum score) per question to count as a severe need, less than severe doesn't qualify.

So for example under washing/bathing I got 2 as they say I can manage with an aid. I can't. They'd been told I can't, and my situation but ignored it. I got 4 for three questions all the others were 2 or 1.

For OT that doesn't put me high enough for any care assessment in those areas.

It's a really shitty way of doing it and I can't risk losing my enhanced award by appealling just because I don't have enough points for OT/SS.

With DLA HR card it wouldn't be a problem because what DLA HR care meant was explained in a paragraph.

OP posts:
Original poster
Becca19962014 · 06/05/2018 00:55

jacobsgirl there's no such organisation here. I'd have to order a wig online and do it myself due to travel issues and being rural.

Given I've been scammed I'm nervous about doing this.

OP posts:
Original poster
Becca19962014 · 06/05/2018 00:55

I got standard mobility.

OP posts:
LanguidLobster · 06/05/2018 01:21

God it sounds like a minefield. Would it help working conditioner through it for a few days then washing it out? I'm sorry if I'm not understanding it and being a bit dense.

I wish I could send someone round to sort it out :)

GlitterGlue · 06/05/2018 09:30

I think (as with quite a few other things) you’re a tad confused about occupational therapists. I really think you should see your GP for a referral.

Original poster
Becca19962014 · 06/05/2018 09:54

I know all about occupational therapists. I've had assessments in the past and I know people who are occupational therapists. I know exactly what they can and cannot do and I know the rules where I live.

My GP has referred, they won't waste time doing it again.

All counties are not the same. You're very lucky if yours is well enough funded they accept self referral with no diagnosis or evidence from secondary care and will help people who don't have severe needs. Here you meet that criteria first and then they assess you.

OP posts:
Original poster
Becca19962014 · 06/05/2018 09:55

The actual assessment is very detailed, much more than a consultant but the consultant must first say you have severe needs before they'll assess,

I hope that makes a bit more sense!

OP posts:
GlitterGlue · 06/05/2018 16:29

I mean this kindly, but you do seem to have a history of not being able/willing to access support and are often wrong about details. Perhaps you should ask again?

Original poster
Becca19962014 · 06/05/2018 17:16

Well you are.
You've no idea.

OP posts:
Longislandicetee · 07/05/2018 09:50

Organic Apple cider vinegar, spray bottle and toothpick comb is what you need. Make a solution of one part organic apple cider vinegar, 2 parts water and add in a couple of drops of your normal conditioner. Make this up in a spray bottle. Then you take a very small section of hair, spray the solution at the knot and gently message the knot. Then use the toothpick comb and pick at the sprayed knot gently. The solution will detangle the knot very easily so you shouldn't need to tug.

trigger2 · 07/05/2018 10:29

Hi Becca, do you know what the social care support is like in your area ? I was a support worker (not mental health) and it was important I built up trust with someone before helping them e.g. supporting them to appts, some counselling. I wonder if this would be available through an Nhs mental heath team or other organisation near you? You may not feel up to it just now but possibly for the future.

It’s so difficult when you’re stuck in the midst of depression, I’ve been there too. It might not feel like it but people are generally good 💐 sending you hugs x

BlankTimes · 07/05/2018 10:50

Don't forget, your Council or GP or Citizens Advice should have a Directory of approved private support workers who you can pay by the hour to help with any needs you have which fall outside the standard provision. It may well be that one of these people could help to sort your hair problem in your own home.

If you don't want to do that, then somewhere in these links there should be someone or some organisation who can help you to access the care you need.

www.disabilitywales.org/

www.scope.org.uk/Support/Disabled-people/local-advice/Wales

www.ableize.com/disabled-groups-and-clubs-by-county/wales/

www.disabilityartscymru.co.uk/equal-spaces/equal-spaces-supporting-information/disability-organisations/

trigger2 · 08/05/2018 06:16

Hi @Becca19962014 I’m just wondering how you are ? x

PamsterWheel · 08/05/2018 07:40

Hello. I haven't time to read the whole thread at the moment, sorry if this has already been suggested.

YouTube. Search 'combing out dreads' lots of clips showing how to do this. You need a comb that has a long metal bit at the end. It will take a few hours to do it but it is possible.

Good luck