Caring for someone with Ehlers-Danlos

Specific disabilities and conditions
1

Hello, I am new to the forum, I have recently been diagnosed with Ehlers Danlos and am looking for information. I am usually able to cope fine on my own but there are a couple of days a month when my pain gets too much and I require my partners help to get through the day. At the moment his work has been fantastic with letting him work from home on those days but we worry that if it becomes more often, then they might start having issues with it.
We were wondering if it is possible to register him as a part time carer in order for it to be a little more official and then his work won’t be able to complain about it. He always does his work and caring for is not a 24/7 thing but on the bad days I do need help to cook, clean, wash my hair and going up and down stairs. I don’t get bad enough to be eligible for any support from the government which is why my partner is doing it.

Any information or tips are very welcome. We are both new to this and have no idea what to do.

Thank you for your time
Allie

2

Hi Allie … welcome to the forum ?

Ehlers-Danlos Syndrome ?

Over to the NHS for an explanation :

Ehlers-Danlos syndromes - NHS

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are several types of EDS that may share some symptoms.

These include:

an increased range of joint movement (joint hypermobility)
stretchy skin
fragile skin that breaks or bruises easily

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

Depending on the type of EDS, the faulty gene may have been inherited from 1 parent or both parents.

Sometimes the faulty gene is not inherited, but occurs in the person for the first time.

EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.

Some of the rare, severe types can be life threatening. ???

Main types of EDS

There are 13 types of EDS, most of which are very rare.

( See the web site for a lot more ! )


A supporting organisation :

https://www.ehlers-danlos.org/

**EDS and BENEFITS … HIGHLY RECOMMENDED READING :

Guides to help with benefits claims – The Ehlers-Danlos Support UK**

Your partners as a carer ?

IF you receive either DLA or PIP ( And the correct flavour at that ) , no problem for your partner to claim CA.

Qualifications needed :

Carer's Allowance: Eligibility - GOV.UK

****

Eligibility

The person you care for

The person you care for must already get one of these benefits:

Personal Independence Payment - daily living component.

Disability Living Allowance - the middle or highest care rate.

Attendance Allowance.

Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit.

Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension.

Armed Forces Independence Payment.

Your eligibility

All of the following must apply:

you’re 16 or over.

you spend at least 35 hours a week caring for someone.

you’ve been in England, Scotland or Wales for at least 2 of the last 3 years (this does not apply if you’re a refugee or have humanitarian protection status).

you normally live in England, Scotland or Wales, or you live abroad as a member of the armed forces (you might still be eligible if you’re moving to or already living in another EEA country or Switzerland).

you’re not in full-time education.

you’re not studying for 21 hours a week or more.

you’re not subject to immigration control.

your income is less than £123 a week after tax, national insurance and expenses.

Can be done online through the above link.

Even if your partner doesn’t qualify , worth mentioning to your gp !

Enough from me … others will be along to extend their welcomes and , possibly , dig down into the actual caring side.

3

Hello Allie

We have had a number of members caring for someone with EDS in the past - if you go to the main index and then use the Adv Search facility at the top of the page, enter Ehlers Danlos and you will get details of previous topics on the subject.

As far as Social Services / the NHS are concerned there isn’t any such thing as a “part time carer” ! Either you are a full time carer entitled to Carers Allowance or you aren’t a carer :unamused:

What I would suggest is that you ask Social Services for a Needs Assessment for yourself to see if you qualify for any help/support - maybe having a Care Assistant come in to help you get up, washed and dressed off a morning for instance. If you are not eligible for any benefits then your husband won’t be entitled to anything under the rules for Carers Allowance either.

4

If needed :

EDS - Links to previous threads / postings … 22 " Hits " as I type … including this thread :

https://www.carersuk.org/forum/search?keywords=eds&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

The following two verbatum off another thread I’ve just posted on :

NEEDS + CARERS assessments :

https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/\

Carer's assessment | Carers UK

Usual forum health warnings … waiting times … a real post code lottery out there.

In addition , what may exist on paper may not also exist in reality.

Threads / forum postings galore on these two … and the continuing LA cutbacks nationwide.

5

I AM a part time carer (my son has learning difficulties). He lives away from home some of the time, coming home regularly. After 40 years (!) I now get counselling support and gym membership.

First step would be to keep a diary, of what you cannot do, and when.
Your are clearly disabled sometimes, but not always.

6

__

Your are clearly disabled sometimes, but not always.

Minute detour … the bane of any PIP assessment … forum postings galore spread across all the main caree forums !

7

Thank you everyone for the responses. I will start going through all the links provided.
Just to clarify, we are not looking to claim any money, not only do I not qualify for most but we both work, i work part time from home so can rest on my bad days and my partner has a very well paid job as well. We are only looking into options to make him a carer so his work can’t stop him from working from home when I need him here. So far it has been good but they have a lot of managerial changes and we are afraid he will get a manager who may not give him that flexibility if he’s not an official carer.

8

Your welcome , Allie.

On the employment side , Employment Law , when applied to carers , does provide a degree of comfort :

Carers and employment | nidirect

HIGHLY RECOMMENDED !

( There’s nothing " Official " about being a carer … no mark / no badge / no nothing ( In more ways than one ! )

( " I’m a carer ! " … " So what ? " … very few out there respond any differently …even some of the professional we carers
have the misfortune to need from time to time. )

9

Any help from Social Services will only be available after a Needs Assessment looking at what you need, and the outcome will be subject to a financial assessment.

If you keep a diary, as suggested, you MIGHT get a “Direct Payment” which you could use to buy the help you need, when you need it. Either from a Care Agency, or a private employer arrangement.

Then you get help without having to rely on your husband.