AF and your welfare related help or services

[Loquitir]

I am interested in hearing from any contributors regarding the effect AF has had on their welfare, employment and care needs. Whether it be AF as a cause of mobility problems or problems with personal care or accessing local authority services such as getting help with housework or shopping.

There are a range of welfare benefits which can support people with difficulties and there is a suggestion that people with problematic AF are simply unable to get vital help because little is known about the symptoms and effects on day to day activities. More also needs to be done by EP cardiology medicine to provide specific information relevant to symptoms suffered by individuals so that they can access the range if help available.

The kind of AF related problems which may entitle you to claim disability related employment help or help with personal or mobility care or social care include things like.

Dizzy spells

Breathlessness

Problems with muscles

Pain issues

Anxiety

Social phobia

Blackouts

Lethargy

Walking problems

Getting out and about

Palpitations and accessing people or help during AF episodes

There are many more.

The kind of help you can get includes

Disability grants for adaptations when thing like stairs are a problem

Employment support allowance if you can not work due to your AF. You may still be able to do a little work when claiming ESA under the permitted rules.

Personal independence payment (PIP) which replaced DLA. You can still get PIP if you work.

Help with social care from your local council

Blue badge to help you get out and about.

The type of help you may get would be dependent on your individual medical circumstances.

I wonder if the AF association has any thoughts about developing a welfare section with advise. Particularly A series of short AF association blank medical templates for medical professionals to complete might help improve AF patients needing help getting access to it as we all know AF is a difficult condition to provide supportive medical evidence to help people access the correct support.

Also there has been a lot of work on the psychological implications of AF on how it affects sufferers, their employment, accessing normal community activities, relationships and personal coping. There is a distinct lack of access to quality and easy to understand publications on how to access appropriate psychological therapies to help crease personal confidence in dealing with the problems of AF. I spent an hour looking through the questions and postings and there is very little response to obtaining psychological help,to deal with what can be very distressing issues arising from being diagnosed with AF or ongoing issues.

I recently contacted the BHF about an AF patient having problems at work but they were unable to provide any insight into how to obtain counselling and help with employment related issues or discrimination directly connected to AF.

Does anyone have any thoughts on how welfare help for AF sufferers could be developed and products designed to help get people in need the help they are entitled to which is additional to medical treatments?

Other impairment related charity such as cancer, MS, mental health, HIV etc have got some degree of welfare related help on their main patient voice representative websites. Some offer advice services due to the impairment specific nature of obtaining help and the complexity of a particular impairment. The RNIB offers tailored advice on how to obtain welfare help and social care help for visually impaired members. It's a broad comprehensive based service. There are around 350,000 visually impaired persons obtaining welfare help. The number of of AF sufferers is around three times this number and little is none about accessing or the levels of help being currently supplied. My concluding thoughts are that this is area of AF which is an unknown quantity and there is an opportunity to try investigate and scope the potential for improved help services.

In the short term I found a link to a blog which aims to provide information on topics and welfare on disability help at thinkability.org.uk

Thanks

[lizwright]

I have always tried to think of my af as something I live with and to take control and manage it. I have deliberately avoided getting a blue badge as I can walk if I take it steadily. I'm fortunate as my jobs are sedentary but I don't view af as a disability, more something I need to work out how to live with and it should get better as the treatment kicks in, not cured (or not in my case) but more manageable.

[BobD Volunteer]

Good answer Liz.

Bob

[Offcut]

I think that AF is one of those unseen burdens. I was diagnosed in 1992 it was not until my lungs packed up and arthritis kicked in from 2008 I considered my self disabled. I have had some very bad days with AF and time off work because of it. I have had a few comments from my employers as to why I am looking so grey but it was only when I had a heart attack that they seemed to understand. I have now got Support ESA but it was an 18 months battle. I got most of my information from my own research, CAB and a great information leaflet from the British Lung Foundation who do have benefits advisor's who will take emails or phone calls on a 0300 number.

Once I was diagnosed and tablets given I had to change my whole working status. I was a Locksmith / Safe engineer I changed my job to IT Sales as I did not have the power or energy to continue. I never asked or took any help from anybody or agency. But that was then and now is a very different story. I went though the benefit advisor gov.uk/benefits-adviser on the Gov site and it stated what else I can possible get, however as on the site it is so vague you need to call someone else to get it right. I will be calling BLF on this rather than DWP as I have found the first person you speak to is not always giving you the whole facts and will not tell you what the form needs to be filled in correctly.

Phill

[Loquitir]

Liz/Bob

Every person has different degrees and effects from AF so no one circumstance fits all. Some people have AF with other conditions and are completely disabled by it.

I read details of a conference in the US recently which highlighted the hidden disability of AF. It had said that about 65% of sufferers had welfare issues and the AF had caused sufferers problems relating to their work.

When such unfortunate circumstances apply, I was just curious to find out how an AF sufferer would be able to access help specific to their AF.

So I was looking for anyone who had been able to get help so the sources of that help could be made more readily available or whether done works needs to be done to help people who need it access support. I may be able to help members construct helpful welfare related products dependant on demand and help from the AFA. It seems to me we are the only group who could achieve guidance on accessing welfare services should one of our members need it.

I appreciate that your circumstances don't require help but there is always a danger that people are too embarrassed or afraid to seek help and as a result this also impacts their health.

Thanks

[jeanjeannie50]

I was lucky in having a desk job as after having my paroxysmal attacks I would be left exhausted for at least a week and during this time stairs were a real problem (thank goodness I live in a bungalow). I don't know how people who have to do physical work cope with this type of AF. So anyone out there who has a physical job you have my sympathy and understanding.

[Loquitir]

Has anyone received:

Employment Support Allowance

Incapacity Benefit

Disability living Allowance

Attendance Allowance for over 65s

Personal Independence Payment

Social care help with shopping or cleaning

For the AF specifically - how did you prove your claim and how difficult was it?

[Hidden]

I appreciate this 7months late,apologies.

I do receive ESA and in the group ESA . I spent a year of appeals, my af has caused mini strokes which in turn left suttle damage behind. One being weakness in my legs so I use walking pole and a lot of dizziness which can leave me swaying. Put this together with the deafness after CVA means it's not safe for me to cross the road on my own.For this I was awarded eventually with the group ESA . It's due for reassessment in jan'15. I am speaking to stroke society for help with pip. Hope this helps others x

[jedimasterlincoln]

I'm fortunate in that I work in the healthcare sector and have the support of my union with regards AF being an underlying health condition which is seeking to be resolved to some degree by ablation. I also have (now, I perhaps didn't earlier) supportive employers.

I'm also lucky that I only really get the occasional anxiety and lethargy, often I can go to bed at 6pm and feel like I used to when it was 11:30pm. Other days I can walk 5 miles over the course of about 6 hours in the open air with friends and not have any symptoms at all.

My EP stated it would be sensible for me not to return to any clinical duties until my ablation, and that was 5 months ago. I'm lucky I have a decade of administration experience to fall back on, and there's always some paperwork to be done in the NHS.

At the back of my mind is that some people with AF will always be in a worse position than me and more entitled to the help than I am, whilst I feel under control and able to manage my workload/home life without breaking any limits I intend to continue without help.