PA hours to regain a level of independence

After two years of pleading with HSE Disability Services I was finally awarded Personal Assistant (PA) support.  I can now leave my home with support, twice a week.

 Update on request for PA hours, written by Corina Duyn

This! is what getting PA hours is all about, regaining dignity and independence. 

A short recap on a very long HSE journey, which I rather would not have made.

• Six years since my first phonecalls and emails to the HSE and then Minster(s) of Health to ask for support to remain living at home independently with PA support.
• Two years of regular phonecalls and emails, tears, bewilderment and utter frustration to at least 12 different people in the various HSE Disability and Social Care departments, 
• After being taken into a carehome as I did not have sufficient care to keep me safely at home, an article in the Journal.ie , and being in hospital for several weeks, I now have a good 7 day HOME care package in place.
• But I was still not allowed to leave my home with my carers. Support outside the home comes under PA support (Personal Assistant) only available to those with a disability. As ME is not on the list of approved disabilities at Waterford Disability Services I was not even entitled to get an assessment.
• After many, many emails and numerous vague promises of 'we will look into this and get back to you...' I pointed out that even the Government states that Disability Services are NEEDS based, not diagnosis based. After three months of that session of emails, I finally managed to get an assessment. 20 months after starting this process in earnest.
• I had a brilliant, heartfelt assessment in October 2019. I felt heard and understood.
• It still took months and several emails to hear the outcome of the assessment. 

YES! I was awarded PAS... (Personal Assistant Services). But was told that there was no money...

This was nonsense as the plan was to change 2.5 homecare hours into PA hours. So no extra money would be required. 

Yet again I was denied support to leave my home.  But the assessor became aware of this and spoke up. Just before Christmas I heard the good news. Yes, the PA hours would be granted. It took another month before they started.

The Big Surprise

Usually PA hours are fulfilled by disability organisations like the IWA. But as it turned out, the hours stayed with the same care agency, hours given to my main carer, with the same rate of pay as her being a carer.

So nothing really changed. Other than that I now have 2.5 dedicated hours a week which are called PA hours, and I can legally escape my house with support.

Great! At last.
But isn’t it too bizarre for words to have to fight for two whole years to have those in power change the label of my care. Same agency, same carer, cost neutral...

The sad thing is that two years ago I was much more able to leave my home... 

My PA seen in the shadow as she documents this momentous adventure.

Going outside!

Last week, going to the Post Office a little over 5 minutes away was my first outing with PA. We were out in total about twenty minutes. Having stopped off at my neighbour on the way. This very elderly lady had recently been discharged from hospital. I had not been able to see her. We talked at the door.

Yesterday evening we went 'around the block'. A ten minute adventure. 
I met one of my neighbours walking her dogs (and cat). I told her that I can now, sometimes, leave my house with my carers. 
She said in total bewilderment: "... You have to ask permission for this?"
Yep!

The ridiculousness of this situation

Imagine: My carer is here. Part of the time she is my PA, where she can legally bring me outside the door. The rest of the time she is my carer, and cannot legally bring me outside the door: to go for a walk, to visit GP, to get some shopping, to go to the bank. Basic stuff. 

PA hours are by same agency, same carer and cost neutral. So, I have requested if All Care hours (or at least this carer's scheduled hours) could be labelled as PA. It would make the world of difference to me. (I will let you know when/if I get a response).

This would allow me to leave the house with PA when I am well enough to go, not just during the allotted time, and risk going over my limited energy levels, which can set me back. 

Another snag... I can not legally be in her car, so I can only have support to have PA walk with me through town. She is allowed to travel with me, but, the local link mini bus is not accessible, and there are no taxis in this town. I could book the wheelchair bus from Independent Living Services. This bus service is available at a limited basis, needs to be booked in advance and mostly only desitination is Dungarvan. (A biggish town about 25 minutes away).  It often means driving around  to pick up or drop of other disabled passengers. Traveling in the wheelchiar bus is uncomfrtable. It is too bumpy, so extremely painful.

The aftermath of my adventures

The getting dressed in coat, hat, scarf, gloves, shoes is in itself an activity for which I need full support. Coming home coat etc need to be peeled of me. I can barely move. After the post office adventure I spend the remainder of the day horizontal. I went to bed for the afternoon back in bed at 6 pm. The following day still very, very tired, but glad I had the opportunity to post a package to a dear friend in Holland (almost) by myself! 
Yesterday I was changed into my pj's as soon as we got back and was in bed at 7pm. But it is soo lovely to have felt the cold evening air, to have met a neighbour, petted her lovely dogs.  It felt like I had been for a long walk. An actual walk. 

a long recovery

Thank you

It has been a Very, Very long journey. A long winded joke, and nobody was laughing.
This really should not have happened in this way. 

There are still outstanding questions to be answered, but I am pleased to have had the long awaited assessment and outcome of PA support.

Thanks to those who finally made this happen. 

Also a Big Thank You all of you whom have followed and supported me throughout this journey.
I hope this victory will also help all others who find themselves in this ridiculous situation.

The HSE really need to join the dots and start listening to the people who have the knowledge of the cracks in the system. 

Hopefully our advocacy work with the HSE Working Group and the Government will help to bring change.

M.E. and the HSE: the good, the ‘bad’ and the ‘ugly’.

For patients with Myalgic Encephalomyelitis (M.E.) the HSE is an organization full of contradictions.

A reflection by MEAI member Corina Duyn on dealing with the HSE

 (Ireland's Health Service Executive)

  
At Primary Care level one can meet HSE staff with up to date medical knowledge of this neurological illness. When being met with understanding and support I am so incredibly grateful. It almost brings me to tears. Yet, of course this knowledge of such a debilitating illness as M.E. should be standard.
It is not.
The higher one goes up the HSE ladder the more challenges one faces to get the support we need. 

The good:

I would like to express a big Thank You to my Primary Care Physiotherapist. She fully embraces the dangers of exercise for people with M.E. She is mindful to prescribe only slight movements to at least maintain my current level of mobility. She gave me ‘Hand Putty’ in the hope to improve the strength in my hands so I can work with clay again. It is with deep gratitude that she supports me as a person with a complex illness, but also takes time to listen to my challenges, hopes, and dreams. When she suggested I need some ‘hands – on’ physio work, she expressed concern, correctly, about causing more harm than good.

The speech and language therapist also fully accepted M.E. and respected that I have a good understanding of my illness. I was referred to her after a recent hospital admission, due to inability to speak and swallow properly. My Occupational Therapist shared her knowledge to make my house safe and fully considered my increasing level of disability. Including providing me with a powered wheelchair, which I can use in my small house. My thanks also goes to my GP, and my Public Health Nurse whom is fighting tirelessly to obtain care support at home. A big thank to my carers, and non-HSE support of family and friends.

The ‘bad’.

The next level of HSE staff are further removed, and perhaps therefore not fully embracing the reality of M.E. These are the people who make decisions over my life, without actually having met me. They work in offices, do the ‘numbers’ and make decisions based on local guidelines. Not national HSE guidelines. Getting support is very much a postcode lottery.

I fought relentlessly for a year to ask for a care package, preferably a Personal Assistant (PA), so I could remain living at home, but also have the support to leave my home with assistance. Over time I received 5 days care for 1.15 hours a day. Weekends, although approved were not provided. The continued fight and lack of suitable care while increasingly more ill resulted my being taken into a care home for the elderly just after Christmas. I was too unwell to look after myself. It was a totally unsuitable location. Read the story here:

I am aware that some HSE staff at this level did fight for me, but were not in a position to make executive decisions. Thank you for speaking up for me.

Coincidentally The Journal.ie (link also included in the above Blog Post) published an article about the long battle, at the same time as I was taken into care. Together this seems have woken up the HSE and ‘suddenly’ I was provided with seven-day a week home care package. Thank you. But it all came at a cost to my health.

The clinch is that in order to be in receipt of Personal Assistant (PA) support, one’s illness/disability has to be listed as an approved disability. As M.E. is not on the Disability Services list in my local Health area (CHO) I could not avail of PA services. In other parts of the country, M.E. is listed as disability. The Postcode lottery of care…

I am regarded as having a disability for all other parts of the HSE, and society.

 

In order to receive home care support one needs to be over 65, or be terminally ill. I am neither. So I fall between the cracks of care. There is a tiny budget for the likes of me within the over 65s HSE home care budget.

Asking for care is not easy. At times it feels like that care is a regarded as a privilege… I would do anything to not need care. To have the freedom to go about my day, in whatever way I please. To have the ability to contribute to society, instead of being a person who is on the receiving end.

Curiously my current home care package is funded by Disability Services. So I seem to have one toe in the door to being accepted as having a disability. Why is this important? Well, the outstanding issue is that with a PA provided by Disability Services, I could also be supported to leave my house. With home care this is a grey area. Home care is what it says on the tin: Home Care. Personal care.

The last time I was able to leave my house on my own was in October 2017. I still had the ability to use a mobility scooter at the time. This is no longer possible and do not feel safe going out on my own in my wheelchair. Unfortunately.

I am still trying to convince the HSE decision makers at this level, the ones whom have never met me, and are not responding to my request to meet me personally, that I have basic needs outside my house too. Like going to the bank, GP, shopping, perhaps even a visit to the library or having a social interaction outside of my house. Normal stuff.

This battle continues to this day.

The ‘Ugly’

The next level of HSE interaction can be even more challenging. Although there are some positives there too, but lots of room for change!

During my recent hospital admission, only a month after returning home from care, I was met with young doctors in A&E. Some in fairness knew about M.E., others acknowledged that they had limited information but were willing to learn. The sudden changes in my ability to speak properly were taken serious. Through test, a mild stroke was ruled out. I was in hospital for three weeks. As part of the assessments however, I was yet again referred to the psychiatry department. As you are damned if you agree to meet them, and damned if you don't, I did meet with a young psychiatrist. In fairness he was great. He totally took on board my experience of illness. He admired how I translate my lived experience through my creative work. This young man concluded by saying that he had no idea why I was referred to psychiatry. Thank you.

However, one morning I was plucked out of bed, and brought into a room with the consultant psychiatrist who had no interest in me. His only aim was to push me into following his ‘knowledge’ on how to fix my now 21 years of illness. He asked me if I was aware of the latest research. I told him I was aware of ongoing medical trials, and some medication. He proceeded to draw me a diagram of a stick figure standing on a path, a bolt of lightening on the right, a thought cloud on the left. My heart sank. He told me the story behind it. In short, it was my thought pattern that is keeping me ill. Even writing it now (for the first time since this happened in February) brings me great sadness. His solution was that I had to push through my ‘perceived’ limitations. Yet again I was made to believe that I am still ill because I do not want to get better. I am to blame for my ongoing illness. Who on earth want to live like this for a lifetime?  I told him his ‘proven treatment’ of CBT (Cognitive Behavioral Therapy) and Graded Exercise for people with M.E. was wrong. Outdated. Totally debunked. Talked about in the UK government as being dangerous and causing harm. I told him how I managed to live with this illness by knowing my limits. To pace my activities; To have a healthy mind; To meditate; To be creative, in every sense of the word. I told him how activities which give me great joy still result in PENE (Post Exertional Neuroimmune Exhaustion) if I continue any longer than my body allows.

I was dismissed.

My hospital discharge notes state that I ‘declined any further intervention with psychiatry.’

Well hell, Yes! But the sad thing is, that psychiatry made its way into my notes. I feel the care I received after this meeting was different. Maybe I am being paranoid, but that is what it felt like. Being momentarily upset after it proved very challenging to walk a few steps independently, was frowned upon. Grieving, which learned to be a necessary part of healing seemed to be viewed as sadness and not having a healthy mind. Other patients, who shed a few tears or gave out in a rather vocal and public way after realizing the impact of new health challenges, were supported. Was I now seen as suffering from a psychiatric illness? I truly don’t know. I don't know what is written in my medical notes. I just know that I was told to do things I could not safely do, like walking on my own.

The hardest part of life with M.E. is to not have my physical illness taken seriously and not to be believed by the ones that should Do No Harm.

I learned to live well with M.E. despite the many challenges, but the ignorance, the lack of understanding and willingness by people higher up in the HSE to be educated about M.E. remains the biggest hurdle to overcome. I became one of the founding members of ME Advocacy Ireland with the aim to bring awareness and hopefully change the way the HSE as well as the Government are caring for people with M.E. We truly need National Guidelines, training of all medical students, a dedicated M.E. consultant, and consistency across the country on the provision of care. On the 14th May, from 11.30am to 2.30pm we are once again Calling for Change for M.E. outside the gates of Leinster House.  Unfortunately I won’t be able to be at the protest myself as I am unable to travel, but will continue to campaign from my home, and through my writing and creative work. Please support us on the day and beyond.

Many Thanks

#Call4Change4ME

For more about M.E. please visit other page on our Blog 

Corina Duyn (Co. Waterford)

For more about my work see www.corinaduyn.com

Nobody Should Have to Live like This - I Need Care to Live Independently

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ME patient Corina Duyn reflects on the challenges of having Disability Services in Waterford accept her as having a disability.

One of ME Advocates Ireland (MEAI) co-founding members, Corina Duyn, a ME patient/advocate, is currently trapped in a care home because she cannot live in her own home without the necessary homecare she requires, and her disabilities are not recognised by the HSE as disabilities in the area where she lives. Her illness Myalgic Encephalomyelitis (ME) is however recognised as a disability elsewhere in Ireland where other patients have been provided with home care packages to suit their needs.

Post code lotteries have become a real issue when it comes to seeking help from the HSE in Ireland. Corina, who needs daily care, is currently looking for homecare that will enable her to live in her own home. She has written to HSE's 'Have Your Say', HSE Community Care, Head of Primary Care, Disability Services, the Public Health Nurse and a Senior Complaint Officer. All are aware of her ongoing situation but so far Corina has not received concrete answers or a solution. Her pleas for help via regular emails and phone calls have fallen on deafened ears and she is now ten days in a care home for the elderly.

Corina who is 56 years of age was forced to go into the home for the elderly over the Christmas period because of a worsening of her health and an inability to care for herself. Corina's greatest fear is that she would have to remain in the care home and won't be able to return to her home. 

Tweet from Chronic Illness Inclusion Project

An article published by TheJournal.ie on January 2nd, and written shortly before Corina deteriorated in her own home during Christmas, highlights the importance of recognising all forms of disability and judging them on their own merit. Sometimes categories of disability do not work and as a result people fall through the cracks in the system. Link to article 

Compiled by MD