Bringing it All Back Home

Annual National Paediatric Haematology/Oncology Meeting 2013

 Very modern, very clean and with an easy-going and friendly staff, the Hilton Hotel can be found towering over Kilmainham.  However, this isn’t a tourist review so let’s just say that Friday November 8th saw the four-star Dublin hotel welcome a five-star group of medical people ranging from paediatric oncologists and haematologists through junior doctors and on to public health and palliative care team nurses.Our Lady's

This was the Annual National Paediatric Haematology/Oncology Meeting for 2013.  Sponsored by the Irish Cancer Society, the subjects covered went from those in the title to Febrile Neutropenia and Palliative Care.  Much of the afternoon was devoted to the latest developments with Sickle Cell treatment so for obvious reasons Hand in Hand was mainly interested in the earlier presentations.

Consultant Paediatric Oncologist Dr. Cormac Owens gave a short overview before introducing Ms.  Dympna Cawley, the hugely impressive Assistant Director of Nursing.  I’ve mentioned elsewhere on this site that I am very new to this scheme of things so it was a relief that Ms Cawley articulated her various points in a way that was accessible, at least to this layman.

I don’t know if Ms. Cawley’s voice is normally so charmingly husky or if it was because she had been celebrating her team’s win the previous night of the Excellence in Health Management Award. [For details see elsewhere on this Hand in Hand site.]  If it were for the latter reason then it was well deserved as they had fought off competition from 13 other nominations.  Holding the award aloft—which she delightedly called the ‘Sam Maguire!’—she talked of the mission and goals of Our Lady’s Children’s Hospital Crumlin, saying:

“I’ve worked there for eight years and can honestly say that we have an amazing team surrounding us.  We have that resource.  Without that team last night would never have happened and the end product of it is quality service for the child.”  She added that the haemophiliac service at Our Lady’s is the only centre in the country.

As she continued she touched on home chemotherapy, the first of many times that day when we would hear of the growing interest in care in the home.  She said that “adolescent care is in its infancy and we are only beginning to meet the needs.  We need to do a lot more and I’m particularly interested in that as well.”  And when talking of the dream of an all-Ireland healthcare facility she commented:  “It’s out there somewhere in the abyss.” She did, however, believe it to be achievable.  We found this a curiously apt image as staring into an abyss is very much how the families who are helped by Hand in Hand feel when they hear that first diagnosis for their child.

Professor Owen Smith

Professor Owen Patrick Smith, Professor of Haematology at Trinity College and Consultant Paediatric Haematologist, also of Crumlin, was the next to speak. Professor Smith proved himself to be a straight-talking and very personable man as he peppered his lecture with jokes that lightened his talk without ever detracting from the seriousness of it.

He had in fact been rather in the limelight in the previous two days, following his appearance on RTE’s Morning Ireland in connection with the letter of that week that was sent to Health Minister James O’Reilly concerning continuing health cuts.  On the topic of waiting times Professor Smith had said bluntly:

“A lot of our cancers in children are high-grade malignancy and we really need to get these drugs into these children in a scheduled and timely fashion because we know from previous times that failing to do that will have a knock-on effect in terms of survival.”

On Friday he continued with the optimistic theme of how survival rates are getting better whilst talking also of getting a handle on ‘the mechanism of drug resistance’, which I understood to mean the manner in which some children respond to chemotherapy less favourably; and this is associated with the disease coming back (relapse).

“We’ve been on a mission to get more children and adolescents with cancer into clinical trials,” he said, adding that “young adults or older adolescents with acute lymphoblastic leukaemia have better survival rates when treated on paediatric protocols.”

Kindly taking the time to talk to Hand in Hand afterwards Professor Smith said:

“We get one bite at this.  We can’t afford to get it wrong.  The amount of fear in parents is palpable…

“We’re hoping to get more resources, more nurses that will allow is to deliver more cancer care in the home.  I’m not talking about needing enormous amounts of money, in fact a relatively small amount can make a huge difference in terms of quality of care and quality of life that is totally safe; and this, ultimately, is cost saving for the Irish tax payer.

“What is key is that we have to develop community paediatrics.  The Americans have invented this thing called ‘Medical Home’ and 80-90% of parents are up for it.”

This is a concept dating back to its introduction by the American Academy of Paediatrics in 1967 and, as it evolved through the work of Honolulu-based Dr. Calvin Sia, came to be defined as ‘a strategy for delivering the family-centred, comprehensive, continuous and co-ordinated care that all infants deserve.’

And it is a concept of which Professor Smith wholly approves.  “When you consider that hospitals rate with the most expensive hotels in the world, starting at €1,500 a night for a bed, then moving help upstream, back into the community/home just makes sense.”

Compassion

Joining us as Professor Smith left (and a big ‘thank you’ to him for the above headline by way of Bob Dylan) was Dr. Cormac Owens who struck me as extremely compassionate in his outlook when talking about the ‘transition period’ for patients:

“We are unfortunately limited in the amount of time that we can spend with them.  You get used to seeing them; and we’re only human.  I find myself thinking about them when they’re not with us and hoping that they’re OK and everything is being looked after at home.

“Across the board it is completely reliant on the individual person.  And we’re reliant on people like you [talking to Hand in Hand Development Manager Jennifer Carpenter].  A lot of it is based on geography so we need people who can think outside the box.  It’s finally about the kids, so we have to bend the rules a bit although obviously we’d like to reduce any need to do that as much as possible.”

Although rushing off, Dympna Cawley also made time to talk to us and we were gratified to find that she was not only very familiar with Hand in Hand, but considered that it provides a model that deserves to be emulated.

No disrespect is intended by glossing over the talks from Consultant Paediatric Haematologist Dr. Aengus O’Marcaigh and Consultant Paediatric Oncologist Dr. Jane Pears.  As previously mentioned I am a layman and these were just a little too specialised for me to even kid myself about understanding them.

I did however (and again this may be due to my late coming to this field) find myself profoundly moved by the talk from Consultant in Palliative Medicine Dr. Maeve O’Reilly.  Again we returned to the theme of care in the home; but this time it was end-of- life care.  “Why do we push it– homecare?” she asked, pointing out that it led to challenges for the family and challenges for the professionals.

“End-of-life care is only a part of palliative care, although we’re often defined by that; but it’s also about prolonging the life.  It’s about how the child died and what the parents remember.  Communication is the key.  Look: I know you’ve heard it before, but a lot of work is done in trying to help parents to move on.”

Dr. O’Reilly spoke of compassion for the child, the child always being of the most importance; but it was her refrain for “clear, consistent communication” that resonated with me.  Nor did she shy away from the practical problems of treating the child in the home, the kind of things that at first I wouldn’t have thought of, such as with just one example, heating.

It came across to me that if at all possible then home was definitely better.  She spoke of the familiarity of home;  of dinner with mom and dad; of the practicalities of access to school, since that was still important, no matter how sick the child.  Yet she was still aware that nothing was normal about any of this.  Nothing.  And she told a story of one family—and I suppose that in this day and age it could refer to many families—where it was the first time in a long while when the whole family gathered around the table.

Yes, it would be fair to say that I found it very upsetting.

Conclusion.

A huge amount of what was said here fits so completely with the model of care that we offer at Hand in Hand. The services provided by this charity enable so much of what the people here place importance on:  there is Dr. Owens talking of hoping that all is going well and taken care of at home; and there is Dr. O’Reilly speaking about giving the dying child some sense of home, family and normality—all of which are facilitated by the services of Hand in Hand.  Things like sitting around the table for a family meal after not being able to do so for weeks or months. It’s such a routine and simple thing in family life—but not so for our families.  They simply may not have had the time or even the strength to shop for food or put the meal together.  For our families, returning to a home that has been thoroughly cleaned, for the laundry to have been taken care of, for the siblings to have been collected from school and for a meal to be placed on the table—this is so important to them.  Hand in Hand tries its best to take care of the supposedly mundane tasks of daily living.

As I chatted to Jennifer on the drive back to Galway we discovered that what we both had taken most from the whole day was a remarkable feeling of optimism.  The breakthroughs are breathtaking, the statistics on the added likelihood of surviving?  Astonishing.  Yes, there is a long way to go and a lot of work remaining to be done; but equally, and with a resounding and life-affirming Yes! …Well, the feeling that we went home with was one of enormous positivity.