Blog 9
Hi Everyone! As always,
if you’re new to this blog, it’s a bit like an Internet diary and reads from
the bottom up, most recent entry at top of page. Can’t believe this is number
Nine!
The
range of MND Support in my life
No point in denying it: my condition is changing again
in a number of ways. My mobility is now very limited. I'm making more use of the wheelchair around the house. I've had more than a few bouts of breathlessness - had to call out the paramedics on one occasion. And eating / swallowing and weight maintenance are becoming much more difficult.
Over the three years since my diagnosis, I have had to seek advice and help from
a number of different agencies, practitioners and other people.
First of all, I wanted to say a public Thank You to all of them, but I also thought it was
about time to talk a bit about the range of support that is out there in the
system, if you’re an MND sufferer. I know that this blog is read in many
different countries, as well as in different areas of the UK, so the caveat is
the obvious one: this is just one patient’s view in just one
geographical area.
I may also be stating the
obvious at times too, but bear with me. Maybe it might start a bit of a
discussion out there in the system. How well served are MND patients? Is there
a difference between areas, between town and country, between countries even?
How joined up is the patient care? Are there any ways in which it could be
improved? Has anyone organised a survey
to assess how equal the quality of care is?
I would like to say right
at the start that I have found almost every aspect of my personal support
excellent. Almost always, I have received good and reassuring advice and prompt help and a kind and
understanding word when they were required.
In this blog, as I piece together the jigsaw of
my own personal journey through MND, I won’t mention names - just to avoid embarrassment,
but I hope these individuals (if they read this) will realise how much I and my
husband appreciate their help.
Initial
diagnosis and ongoing support – the key players
As I’ve said before, the
moment of diagnosis is inevitably engrained in our memory. Consultants can’t
fudge their words. They need to be clear and practical. And to a certain
extent, direct and cold. I just remember thinking that all hope was gone. There
was a firm goodbye handshake from the consultant and a smile from a nurse and
we were suddenly aware of the other person in the room who now took control of
the situation and ushered us into an adjacent room – the MND Nurse, with whom
we have built up a very personal and supportive relationship.
Right from the start, her
warm, gentle, practical approach was reassuring. On that day, she said we could have as much
time as we wanted to think, talk, ask questions. She assured us that
she would be at the end of a phone or email and would guide us through what was
to come. We see her every three months for about an hour and her focus remains
totally on us and on finding practical solutions in a palliative context. An
excellent quality of service, delivered with humanity and care and at the end
of a phone, if we need her. What more could you ask for?
At this point, I must
make reference to Gordon Aikman, who in Scotland has valiantly and consistently
pursued government to raise awareness of the disease and has ultimately contributed to a better quality of care for MND patients. This has included a welcome increase in the number of MND nurses in
Scotland in recent months.
At the same time we were
referred to the respiratory clinic, where another consultant explained that the
hospital’s approach was to work closely with neurology to monitor this
particular aspect of the disease. Again the ongoing quality of dialogue with
the consultant has been excellent – open, kind, practical, positive, focused on
solving problems and removing concerns. Flight tests and checking of oxygen
levels have been regular and reassuring.
When I had to have the
feeding tube fitted, I came into contact with the gastrostomy nurse whose help
became (during emergencies) very important. She treats me as an individual, is
wonderfully warm and reassuring and has helped to make possible this important
change to my lifestyle.
Local
medical support – the players
From an early stage, our
doctors / GPs (general practitioners) were closely involved in our case and we have
maintained a reassuring monthly appointment with one of them. His understanding of our
initial emotional turmoil was superb and he has continued to focus on every
aspect of my welfare. When necessary, there has been a really good liaison
between the doctors, MND nurse and consultant, where there have been difficulties
with, say, medicines. I had not expected this to be so joined-up and cohesive.
Our practice also has a
very good focus on palliative care. For example, I’ve been registered with NHS 24,
so that they have access in an emergency to my case notes, which has already
saved time when we had to call out the paramedics recently. And I now have a
“Just in Case” case, which contains equipment and small amounts of medicines,
should there be an out-of-hours emergency.
I’ve also had dealings
with the practice nurses for blood tests and after several initial problems
after my gastrostomy, I have maintained a weekly home visit from a district
nurse, who has given invaluable advice on medicines, keeps a weather eye on
changes in my condition and accesses further help where necessary. Their
interpersonal skills and warmth make their weekly visit a pleasure (if that’s
possible, when someone is inserting a needle in your arm or a suppository
elsewhere!)
Other players
The nutritionist has been
a regular visitor over the period, monitoring my weight and eating abilities
and most recently, organising food supplements, as eating becomes more
difficult and my weight has fallen. A physiotherapist has advised on walking
and basic exercise and accessed equipment for me. The occupational therapist
has assessed mobility and domestic needs and organised pillow lifts, commodes,
zimmers, exercise machines etc. The Orthotics department at the hospital has
fitted me with a foot and a hand splint. We also touched base with a speech and language specialist but by that stage, my voice had disappeared.
MND
Scotland
After a diagnosis which
confused and scared us, it was almost a relief to be handed an MND Scotland
(MNDS) folder, containing a good range of information about the disease. And
access to a very good MNDS website with information sheets and FAQs on just
about every aspect of the disease.
Soon after diagnosis, a
welfare officer from MNDS came to discuss benefits and access to a disabled
badge and even helped us to complete forms. Recently, we have received a loan
of a recliner-riser chair from MNDS.
Also, as many of you will
know, MNDS offers a very full range of support, from access to a holiday
chalet, through massage and aroma therapy and loans of equipment, to regular forums where you can meet
other MND patients and their families. A wonderful organisation, raising
awareness and funds and offering a wide range of advice and support!
Other sources of advice and support
In the early months, I
also had a couple of meetings with a holistic nutritionist. Although a bit “New
Age” at times, (candles, incense, blankets and sometimes intrusive questioning!), I found
it helped me to be calm and also introduced me to additional anti-oxidant
supplements and minerals, which I have taken every day since. I believe they’ve
helped.
And last but not least,
there is the wonderful support offered by the now 118 members of MND Together
on Facebook, which we set up a few months ago. An amazing group of mainly
sufferers, their families and friends living in Scotland, England, Ireland,
Australia, the US, Canada, New Zealand, Albania and Sweden! We share each
other’s lives, our stories, hopes and worries. We share solutions to problems,
pass on latest research and, most importantly, we care for each other. Long may
this group prosper!
Reading over these few
pages, I tell myself again how lucky I am to enjoy such a range of support. And
I’m reassured that whatever the coming months may bring, I am in safe hands and can call
on help, support and advice, whenever it’s required.
Thank you for reading
this. It would be really interesting to hear of others’ experiences. You can do
this in any of the following ways:
·
Leave a message on this blog, although it’s
not always easy.
·
If you’re a member of MND Together on
Facebook, post there.
