Tuesday, 28 January 2020

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
ME Advocates Ireland (MEAI) member Corina Duyn in wheelchair at post office. First time out with PA

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... 

ME Advocate Ireland (MEAI) member in wheelchair on the road
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?"

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. 

ME Advocates Ireland (MEAI) member Corina Duyn recovering in recliner
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.

Tuesday, 17 December 2019

Positive Preliminary Meeting with Minister re Future of Care for M.E.

 On Wed 4th December 2019 members of ME Advocates Ireland (MEAI) 

met with Minister for Health, Simon Harris TD.

By Joan Byrne
ME Advocates Ireland members with Declan from Irish M.E. Trust
Declan Carroll, Irish M.E. Trust with some members of MEAI:
Christine Fenton, Rachel Lynch, Joan Byrne


We had requested this meeting in May 2018 in order to impress upon the Minister what the real lived experience of people with M.E (PWME) is in Ireland today.
Many of you will know that we have consistently lobbied the HSE and Dept of Health in recent years for better medical education, adoption and use of the ICC-ME diagnostic criteria, better supports for PWME, removal of inappropriate treatment protocols (CBT and GET), the need for expert medical supports at Consultancy level, the need for appropriate paediatric supports including transition to adult services, etc.

We have raised numerous Parliamentary Questions through our TDs and have succeeded in raising the profile of Myalgic Encephalomyelitis in the public sphere. Many of the responses to our PQs by the HSE gave incorrect information about M.E. and this gave us an opportunity to challenge that misinformation within our health service.

We have also organised several visibility events outside Leinster House over the last number of years and this has resulted in us building up good relationships with many politicians and key influencers and we would like to thank all M.E. patients, carers, family members and friends who supported these events in any way.

HSE M.E. Working Group

Alongside all this, an independent investigation recommended the HSE create an M.E. Working Group. (We have blogged about this previously).  Through the HSE’s ‘Engaging Patients & Families’ programme, ME Advocates Ireland (MEAI) members expressed their interest and were accepted onto this Working Group. MEAI members ensure we are referencing international best practice to ensure comprehensive guidelines result from the work of the Group to establish what expected best practice should be for those living with M.E. in Ireland.

The investigation recommendations about M.E. essentially became the Working Group ‘Terms of Reference’ which define the remit of the Group.

The importance of including both Irish M.E. Charities was upheld by the MEAI members at the first meeting in May.


Meeting with the Minister for Health

We were finally offered a meeting with the Minister for Health, Simon Harris TD, on 4th December and the following gives you an idea of what we discussed at that meeting. Also represented at the meeting were officials from the HSE and the Dept of Health and Noel Rock, TD for Dublin North West.

The Minister was very welcoming, responsive and interested in hearing what we had to say and asked some very key questions, giving us the opportunity to further expand on many of the issues raised.

The following key areas were raised and discussed at the meeting:

·     Diagnostic criteria and the need to use the International Consensus Criteria (ICC-ME) to avoid the potential for misdiagnosis amongst the patient group.
·     The lack of education amongst GPs and other health care professionals about the aetiology of M.E. The role of the ICGP in ensuring appropriate education and training is made available to GPs.
·     The disadvantage patients experience as a result of not having available expertise to treat and support them.
·     The need for the HSE to operate from consistent, correct information on M.E.
·     The dangers of real harm being caused to people with M.E. as a result of recommending inappropriate treatment protocols such as Graded Exercise Therapy and Cognitive Behaviour Therapy
·     The need to end inappropriate referrals to psychiatry.
The disadvantage experienced by PWME as a result of ‘dismissive attitudes’ often resulting in them choosing not to see their GP or Consultant or even attending the Emergency Department.
·     The case for an M.E. specialist consultant.
·     The issues children with M.E. are faced with in Paediatric Services.
·     The role of the M.E. Working Group in ensuring that the HSE carry out a comprehensive International Literature Review of research, as well as including patient experiences, to reduce the HSE reliance on the UK NICE ME/CFS guidelines and the review of those guidelines due next year. In this respect the Minister stated his clear support for the M.E. Working Group. The Minister offered some suggestions about possible measures to safeguard M.E. patients in the interim and agreed to follow up on these.

A powerful video message to the Minister was played from severe M.E. patient and founder member of ME Advocates Ireland, Noreen Murphy.

The Minister asked some very key questions and asked for some time to reflect on our meeting and committed to meeting us again after the next M.E. Working Group meeting in January 2020.

We look forward to meeting him again in the New Year and following up on some of the issues discussed.

Thank you to all our advocates whose hard work made this possible. We have something now to build on and we continue to be committed to ensuring that M.E. patients in Ireland are safe from harm and are treated with dignity, respect and correct knowledge by all within the healthcare system.

(For further information about the issues raised, please visit the relevant pages on this blog)

Thursday, 21 November 2019

The walls we continue to face

It has been just over a year since I wrote about the challenges 
of gaining adequate care to live independently in my home. See here

A lot has changed for the better, 
but the main issue of obtaining PA Services to be supported to leave my home
 has not been resolved. (Yet...)

shadow puppet in wheelchair facing a wall. Bird on her chair control and on 2 flying on the other side of the wall

To recap

In short Myalgic Encephalomyelitis (ME) is not on the Waterford Disability Services approved list of disabilities. I was thus not eligible to get an assessment for Personal Assistant (PA) services.  However I have a Primary Medical Cert, Mobility Allowance, a powered wheelchair from the HSE (our Irish Healthcare System), etc. etc. and my house is fully adapted for wheelchair use. After many emails, and a request from my Public Health Nurse, I did have 5 mornings of 45-minute home care. This was totally inadequate.

After I wrote my account of this senseless and challenging struggle to request to have autonomy over my care the Journal.ie online newspaper took on my story.  Their edited version was scheduled to go out during the Christmas/New Year period. As it happened, I ended up in care the days after Christmas.

Taken into care

I had flagged various departments of the HSE to the fact that there simply was not going to be enough care over the holiday period. Although deemed eligible for weekend care, they kept telling me that there was no funding for this. No weekends mean no Bank Holiday care either. Over the two weeks around he holidays I would have 4 mornings of 45-minute care. Eight days of none. Nothing was done to prevent the inevitable. I became ill a week or so before Christmas and ended up being taken into a local rest home for the elderly the day after Christmas. A totally unsuitable setting for many reasons.
Both the article in the Journal and the blog post written by my ME Advocates Ireland colleague Moira about being in care, gained a lot of attention on social media. They prompted the HSE into action and my care package was increased to twice one hour of daily care, seven days a week.  After nearly two weeks in care I returned home.

Health in decline 

My health had taken a big dip. Over the coming weeks my care package was increased to slightly longer hours in the morning. By February I was so ill that I had great difficulty speaking. It was as if the muscles in my face were unable to perform their basic function. I ended up in hospital with a suspected stroke. I remained there for three weeks. A stroke was ruled out, but I had great difficulty keeping my head up without fainting. Walking even with a walking frame was very impaired. Speaking and swallowing difficulties remained for months.
Unfortunately, one of the assessments I had to have was with a Functional Medicine Psychiatrist, as I was deemed ‘sad’. It cannot be said enough that the biologically debilitating neurological illness ME cannot be successfully treated by functional medicine, and the call for an assessment by a functional medic could only mean that they believed my symptoms were all in my head.

The young trainee psychiatrist with a beautiful open mind totally understood my account of the challenges of life with illness. I am not afraid to show my vulnerability and talk about my life. The medical team must have seen vulnerability as a weakness, and brought me in to see the main psychiatrist. He had no interest in my account of having lived with this illness for two decades and being totally aware of what I am and am not capable of. He drew me a stick figure, a thought cloud and a bolt of lightning.  (I am sorry I didn't ask for this masterpiece…). In a nutshell, I had to push through my limitations and have happy thoughts.

As the hospital is in Cork, and I live in the neighbouring County Waterford, the discharge nurse could not communicate with my Public Health Nurse (PHN). HSE logic. I had to exchange contact details between my PHS and medical team. After three weeks I was discharged, with no idea if I could actually still live independently. Some of the nurses were worried I would end up back in hospital in a few days. A temporary increase in care hours was put in place: Weekdays, morning and evening two hours; and two shorter calls during weekends. Over the coming weeks the evening call was shortened and moved to a midday call. Although my care package is reviewed every few months, these hours are still in place. I am very grateful for the safety this provides and for the wonderful carers I have.

It has taken eight months to regain some level of well being again, but my health is precarious. The numb feeling in my mouth and resulting speaking and swallowing difficulties remained for months. There are many days I spend mainly inside my home, lying in my recliner chair, or confined to bed. There are days I can enjoy the peace of my garden and have my mind focused on creative pursuits. However, I am now rarely able to leave my home. Certainly not unaided.
Which brings me back to the continued request for PA support from Disability Services.

No support to go outside of my home

As outlined a year ago, home care does not involve any care outside the home. My ongoing request for support to go to the shops, to the bank, to GP or chemist, or on a more social and wellbeing level, to go to the library, a cafĂ©… continued to fall on deaf ears until a month ago. This is still very much a medical model of care. Someone who doesn’t know me decides on what I can and cannot do.

In May I repeated my request, and after many emails back and forth I learned which person in which department would have the ultimate say in whether I would be granted an assessment from Disability Services with the aim to ask for PA support. If successful, the day may come for me to escape my four walls with the safety of PA support.
I never received a response.

In July I forwarded guidelines from the Department of Health regarding Disability Services. These were obtained through Parliamentary Questions on behalf of ME Advocates Ireland.

  HSE Disability Services provide personal and social supports based on the needs of the individual, rather than the provision of services base on a specific diagnosis or condition 
The Government is committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose and enhance their ability to tailor the supports required to meet their needs and plan their lives. 

Over the past year I have received many empty promises. For example:

  • 22 January: ‘... in relation to other queries [Assessment for PA], I will make enquiries and will revert back with an update once same is available to me...’
  • 18th January: ‘... as previously discussed with Corina the local Disability team plan on undertaking a second assessment with Corina...’ [I never had a first assessment]
  • No responses to emails 7 and 23 may.
  • 3rd July: ‘... is following up on this matter and will revert to you...’
  • I wrote again to ask for an update:
  • 6 August: ‘ ... is annual leave until 14th August and we will revert with a response on return. Sincere apologies for the delay in responding to you...’
  • I wrote again to ask for an update:
  • 29 August: ‘... apologies for delay in responding to your below email. The Head of Service for Social Care is following up in terms of the assessment and we will have an update for you in same soon’.

In September I got fed up with it all. It took me a very long time to totally lose my patience and I contacted the Complaints Officer again. She had been so helpful to put the wheels in motion to get me out of care in January. She suggested that at this stage I would be entitled to contact the Chief Officer, which I did. A few weeks later I received a promise of an assessment with Disability Services.
Thank you.

Disability Assessment at last, after 20 months of asking

In October a Disability Services Liaison Officer came to my house with my Public Health Nurse. We had a very frank, open, and considerate discussion. The many cracks I fall in because of ME not being recognized under disability were identified. She could clearly see how much my illness has impacted on my ability to function. And I should be able to go outside my door…
I truly felt heard. Believed. Understood.
I felt at last that my story is being circulated by someone within the disability services and not just via my emails, and via the limited assessment procedures available to the Public Health Nurse. I hoped I would finally be supported to leave my home. And have control over how I use my care hours, beyond personal care. I am immensely grateful for the excellent home care, but I need to go outside my home at times.
I need the personal support as I need help to get dressed, and when arriving home I would be so tired that I need to be undressed, and put to bed. I prefer not to ask friends to do this.

The assessment was a month ago.
I have not heard anything since, other than yet again a promise of a response, when I made an enquiry last week. No response to follow up email this week.
My thoughts go from: “was this a ticking boxes exercise and thus fulfilled my request for an assessment”. To: “they are taking their time to set up a proper care package, looking at all the identified cracks in the system…”
Maybe, now the Personal Assistance Services Motion has passed in the Government on 19 November 2019, I will finally get an answer?

The perception that living with illness is a privilege 

This year I had to totally re-evaluate who I am. I am an independently minded woman, but can I remain living in my lovely home on my own? Can I continue to enjoy my own space and my newly designed wheelchair accessible garden? It truly is my place of peace and healing. What are my creative abilities at present? Although living with this illness for 21 years, this past year has been one of big adjustments. I had to accept strangers into my private space. I had to accept getting help with basic personal care. I had to accept that I am yet again mostly housebound. I had to accept that I also need support to bring my creative ideas into being.

Some people suggest that I am lucky to have so much time for my creative life. That I am privileged to have my house adapted for wheelchair use, to take ownership of a powered wheelchair and have a loan of a HSE profiling bed (hospital bed). Maybe I feed this distorted image by sharing images of my creative pursuits? Even if these images only constitute a few minutes out of a day, or week? I rather share these visual snippets than the reality of pain, days in bed, at times loneliness. I tell my experiences through my puppets and other creative explorations.

I see myself as an advocate for people with ME and other chronic illnesses and disabilities. My quest for care and highlighting these struggles are not just for my own benefit. I hope to have a tiny say in the way people with ME in Ireland continue to hit brick walls.
I might not have the capability to convey politics surrounding ME, but I hope that with sharing snippets of my personal story and my visuals of my creativity I can make a small difference in the lives of my fellow ‘hermits’.

Thank you for taking the time to read this.
And if I receive news regarding PA support, I will let you know for sure.

Corina Duyn
Founder member of MEAI

PS. Soon, I will be sharing thoughts about my most recent creative explorations in puppetry in more detail on my personal blogMy work can also be followed on Facebook or Instagram

Wednesday, 13 November 2019

Most recent update on the HSE Working Group on ME

Our previous blog post in May outlined some details re the start of the process of the HSE Working Group on Myalgic Encephalomyelitis (ME) and shows the Terms of Reference here.

For those who haven't read anything yet re the Working Group it was set up on the back of a recommendation from an Independent Investigation into Christine Fenton's complaint to the HSE about her HSE journey with ME. 


The Working Group have identified the next few steps in their work programme and is getting ready to send out surveys to gather important information about people with ME. It is essential that as many people as possible in the Irish ME Community are reached when surveys, etc, are taking place. 

Letting the Working Group know how you or those not on social media, e.g. not on Facebook, can be reached in a way which meets the specific needs of a person with ME is vital

Can you please share any ideas you may have, or any suggestions which could help someone else with ME, about how the Working Group could reach others not on Facebook or other social media platforms. Please add your ideas in the comments area below, or email to info@meadvocatesireland.com We will collate all information and pass onto the Working Group.

Your ideas matter. 

Please see important message below from the Chair of the Working Group, Marie Kehoe-O’Sullivan via Christine Fenton


Dear Friends,

The national ME working group have now completed a stakeholder analysis and identified the next two steps in our work programme.
1. We are going to continue to conduct and evaluate international literature on ME in order to identify the evidence to underpin our work.
2. We are going to consult with people who are living with ME, their carers, subject area specialists, health and social care professionals, service planner and coordinators. In order to prepare for this consultation, we would like you to let us know of any particular supports that you may need to participate in this process. 

We will develop a survey tool and some of the ways that we have discussed ensuring participation is that we will offer the survey online, in paper, by telephone and where necessary if you are home-bound, in person. 

Please let us know if there are any other supports that you can think of.

Looking forward to hearing from you,
Marie Kehoe-O’Sullivan, Chair of the Working Group