The proceedings are
reported in the language in which they were spoken in the
committee. In addition, a transcription of the simultaneous
interpretation is included. Where contributors have supplied
corrections to their evidence, these are noted in the
transcript.
Dechreuodd y cyfarfod am 09:02.
The meeting began at 09:02.
|
Cyflwyniad,
Ymddiheuriadau, Dirprwyon a Datganiadau o Fuddiant
Introduction, Apologies, Substitutions and Declarations of
Interest
|
[1]
David J. Rowlands: Good morning. Bore da. We’ll now
start the formal meeting of the Petitions Committee. Welcome,
everybody, to the committee meeting. I will make note that
participants are welcome to speak in Welsh or English. Headsets are
available for translation of Welsh to English, and there is no need
to turn off mobile phones, but any devices should be left in silent
mode. There are no apologies or substitutions this morning.
|
Deisebau Newydd
New Petitions
|
[2]
David J. Rowlands: So, I think we shall proceed with the
first of the new petitions. This petition is to ‘Introduce
updated stroke advice—B.E.F.A.S.T.—and help save lives
and livelihoods’. The petition was submitted by Phillip
Easton, having collected 105 signatures. The idea is to change the
stroke advice that’s available and to include
‘balance’ and ‘eyes’ in the FAST
directions, which are currently being made available. The
first-consideration letter was sent to the Cabinet Secretary for
Health, Well-being and Sport on 22 May and we received a reply on 7
July. It was forwarded to the petitioner for information only, and
accepting that there was insufficient time for him to provide a
response before the papers were published. The Act FAST campaign
has been running in England and Wales since 2009 and we should note
here that the stroke implementation group cannot endorse the use of
BEFAST in Wales at this time as evidence in support would appear to
be limited. Possible actions on this are to give the petitioner the
opportunity to comment on the Cabinet Secretary’s response
before considering the petition again as soon as possible in the
autumn term. In the meantime, the committee could also write to the
Stroke Association to seek their views on the petition and ask for
the petitioner’s views on both responses at the same time. Do
the committee have any comments on that?
|
[3]
Mike Hedges: I’ll go first. Yes, I would urge us to
follow our normal practice, and write to the Stoke Association,
when we get their reply and we’ve got the Welsh
Government’s reply, send it to the petitioner, and let the
petitioner have an opportunity to respond.
|
[4]
David J. Rowlands: Are the rest of the committee in
agreement with that?
|
[5]
Neil McEvoy: Yes.
|
[6]
Janet Finch-Saunders: Yes.
|
[7]
David J. Rowlands: Fine. Okay. The action that we’d
like to go forward is to give the petitioner the opportunity to
comment on the Cabinet Secretary’s response before
considering the petition again as soon as possible in the autumn
term, and in the meantime the committee should also write to the
Stroke Association to seek their views on the petition and ask for
the petitioner’s views on both responses at the same
time.
|
[8]
The next petition is to ‘Make a Vegan Option Compulsory in
Public Canteens’. The petition was submitted by Rachel
Turnbull, having collected 118 signatures. A first-consideration
letter was sent to the Cabinet Secretary for Health, Well-being and
Sport on 6 June. At the time papers were published, no response had
been received from the Cabinet Secretary. The possible actions with
regard to this is to note that a response has not yet been received
from the Cabinet Secretary and, once received, give the petitioner
the opportunity to comment on it before considering the petition
again as soon as possible in the autumn term. Are we all
content?
|
[9]
Neil McEvoy: Yes.
|
[10]
Mike Hedges: Yes.
|
[11]
David J. Rowlands:
Fine, so that’s the action we will
take: that we note that there is no response received from the
Cabinet Secretary, and, once received, give the petitioner the
opportunity to comment on it before considering the petition again
as soon as possible in the autumn term.
|
[12]
The next petition under consideration is
‘Trunk Road Through Tre-Taliesin: Urgent Need for Effective
Speed-Calming Measures’. This was submitted by Antony
Foulkes, having collected 52 signatures. Now, I think we note that
the Cabinet Secretary was sent a letter on 6 June, and a response
was received on 23 June. The Welsh Government has advised the local
community that they will be investigating the possible safety
measures for the A487. The petitioners have offered to meet the
officials at the point at which they undertake their assessment,
but the offer has not been accepted. The possible actions here are
to write to the Cabinet Secretary for Economy and Infrastructure to
discuss further details about the timing of the review and if he
will inform the committee of the outcome in due course, and to ask
if his officials will meet with the action group.
|
[13]
Mike Hedges: Seems reasonable.
|
[14]
David J. Rowlands:
Are we content that that should be the
procedure?
|
[15]
Mike Hedges: Yes
|
[16]
Neil McEvoy: Yes.
|
[17]
David J. Rowlands:
Fine, so we will write to the Cabinet
Secretary and request further details about the timing of the
review, and if he would inform the committee of the outcome in due
course, and to ask if his officials will meet with the action
group.
|
[18]
The next petition is ‘A call for
the return of 24 hour Consultant led Obstetrics, Paediatrics and
SCBU (Special Care Baby Unit) to Withybush DGH.’ The petition
was submitted by SWAT—Save Withybush Action Team—having
collected 3,532 signatures: 759 on line, and 2,773 on paper. I
think we ought to note here that this is the second petition with
regard to this matter, the first having been received, I think, in
2014. Now, the petitioners now claim that there is new evidence to
show—I think, very recently—that there are figures to
show that it has impacted on the local community, in particular
with regard to disabled and young mothers, and therefore they have
brought this petition again before the Assembly.
|
[19]
I think the possible action, then, with
regard to this, is that we note that a response was received from
the Cabinet Secretary just before the papers were due to be
published, and to give the petitioner the opportunity to comment on
it before considering the petition again as soon as possible in the
autumn term. The committee could also consider writing to Hywel Dda
university health board at this stage, to ask what
assessment they have made of the impact of the changes on
obstetrics, paediatrics and SCBU services in the area since they
were centralised at Glangwili, and for further information on how
the recent perinatal mortality rates compares to those under the
previous arrangements. Is the committee content with that? Are
there any additions that one might make to those
recommendations?
|
[20]
Janet Finch-Saunders: May I just ask: where’s the
nearest consultant-led obstetric unit? Because I know we’ve
had a big fight in north Wales on that, and we are
actually—you know, to be fair, the Welsh Government are doing
something about it. I just was curious, really, as to how far
consultant-led obstetric units are away from this hospital.
|
[21]
David J. Rowlands: I think they’re now centralised at
Glangwili, aren’t they? That’s my understanding of
it.
|
[22]
Janet Finch-Saunders: How far is that? Does anyone know?
|
[23]
Mike Hedges: I think, Carmarthen. Glangwili’s just on
the Carmarthen road going out towards—
|
[24]
Janet Finch-Saunders: Easily accessible for anyone who might
need those particular services.
|
[25]
Mike Hedges: Nowhere is easily accessible in west Wales
because the roads are not—. Easily accessible: you need
motorways and dual carriageways. There’s a limited amount of
good roads around there. So, that’s where some of the
difficulties are. The other thing is that they’ve got a
shortage of skilled staff to cover it. That’s one of the
weaknesses of the health board structure because the health board
is responsible for recruitment and placing people. If hospitals
were responsible for doing it themselves and they were run as
stand-alone hospitals, then we’d either have or not have the
service, depending on the hospital’s ability to recruit
staff. If the health board recruits staff and makes decisions where
to put people, then that creates a feeling of ‘we are left
out’.
|
[26]
Janet Finch-Saunders: Okay.
|
[27]
David J. Rowlands: Right, fine. Would it be appropriate for
us to ask if there are any data available on the timing from the
previous hospital’s accessibility to that now at
Glangwili?
|
[28]
Janet Finch-Saunders: Yes. It’s just that having been
involved in north Wales and a huge campaign—we had thousands
signing a petition, and that is going forward now. I suppose I
couldn’t really sit here and not want the same for another
part of Wales as we are now, sort of, able to have in north
Wales.
|
[29]
David J. Rowlands: Yes. So, do you understand that
we’re going to ask for data? If the data are available with
regard to the transfer times to Glangwili as opposed to the
transfer times to other hospitals [Inaudible.]
|
[30]
Mr Thomas: [Inaudible.] Yes.
|
[31]
David J. Rowlands: That’s fine, okay. So they’re
the recommendations in addition to the possible actions that I
noted earlier. Okay, thank you.
|
[32]
The next petition refers to making Senedd TV accessible to deaf
people. The petition was submitted by Mervyn Jones and first
considered on 21 January 2014, having collected 25 signatures. The
decision on 9 May, when the committee last considered this
petition, was to write to the Llywydd to request an update on any
steps taken to make coverage of Assembly proceedings more
accessible to deaf people since the previous correspondence. We
would advise the petitioner that the issues relating to
accessibility at the cross-party group on deaf issues cannot be
addressed by the committee and should be raised with the group
itself. So, the possible actions are—I’m sorry. The
points for discussion are that the Llywydd outlined a number of
improvements, including to the accuracy of the interpretation of
First Minister’s questions in BSL, and our possible actions,
therefore, are to await the views of the petitioner before deciding
what action to take, or to close the petition on the basis that
there is little more that the committee can do to take the issue
forward.
|
[33]
Janet Finch-Saunders: I’m going to be controversial
now. I’m disappointed that we’ve had to have a petition
come forward. We are an evolving Government and legislature and,
you know, we all talk about transparency in democratic proceedings,
and we also say that equality is the main thread that runs through
all the services that we provide. I think that the
Commission—. You know, we spend on nice entrances and
we’ve just had all the first floor revamped, but, for me,
it’s really key that anyone who wants to participate in the
democratic proceedings here with any sight impairment or hearing
loss is able to do so.
|
09:15
|
[34]
So, I think that, as a committee, we should all be lobbying to have
those facilities available and it would be really good if we, as a
committee, actually wrote to the Commission, I think. I don’t
know what it’s going to cost, but, in the scheme of things of
what is spent here, I cannot see why that barrier should still
exist today, in 2017. We’re 19 years old in terms of
devolution and I think that we should be accessible to all, really,
so that they can participate in our democratic proceedings.
|
[35]
David J. Rowlands:
Neil, did you want to make any
comment?
|
[36]
Neil McEvoy: Yes, I totally agree. Maybe we should write back to
the Llywydd because we currently show signed and subtitled
FMQs—great—on the YouTube channel, so then everything
else isn’t shown. It isn’t good enough, really. I
don’t think the response is strong enough. I agree with
Janet. I think we should maybe write back and just ask them what
they are doing to make everything available with subtitles. It
isn’t rocket science. It’s just a job—one
person’s job.
|
[37]
David. J Rowlands:
Do you have anything to add on
that?
|
[38]
Mike Hedges: I sort of half agree with Neil. I think that what we
need is a programme to say: they’ve got First
Minister’s questions; then they should be looking at how
they’re going to do other questions and so—. I
don’t expect them to put everything on overnight into sign,
but, certainly, they’ve got the First
Minister—let’s have the other Ministers’
questions and a programme then so that the whole of the proceedings
are in sign. Let’s have a programme of how—. It might
take five or six years to do it, but let’s build up to it,
but they should be looking to that. Perhaps we could write to Elin
and ask them if they could look at producing a programme of
improvement, starting perhaps with other ministerial
questions.
|
[39]
David J. Rowlands:
Yes, fine. Okay. So, the suggestion by
the committee is that we’ll write again to the Llywydd and
ask, ‘Can a programme be put in place in order to introduce
BSL to as much of the proceedings in the Senedd as is possible, and
could you give us a timeline that might be appropriate with regard
to that?’ We will also, I feel, write to the petitioner to
tell him the decision that we’ve made with regard to that so
that he knows exactly what’s going on.
|
[40]
Janet Finch-Saunders:
Can I just ask, Chairman, on the letter
going in, if we could just sort of bring to their attention that
this did come in in 2014, so there have been three years there in
which changes could have been made, little by little.
|
[41]
David J. Rowlands:
Fine, yes. Could we include in that
letter, then, the fact that this petition has been—? Fine.
Thank you.
|
[42]
Janet Finch-Saunders:
Thank you, Chair.
|
[43]
David J. Rowlands:
The next petition under scrutiny is
‘Child and Adolescent
Eating Disorder Service’. It was submitted by Helen
Missen back on 17 July 2012, having collected
246 signatures. I think what the Welsh Government is saying with
this is that there are measures in place with regard to eating and
the provision of eating in all public places. It comes under the
papers for the Cabinet Secretary for health well-being. The
committee last considered this petition on 23 May, and we agreed to
write to the Cabinet Secretary for Health, Well-being and Sport to
share the comments made by the petitioner and to ask for an update
on how the additional funding for eating disorder services in
2017-18 will be used. The Cabinet Secretary’s response was
received on 22 June. The petitioner had been informed that the
petition was considered but had not responded at the time the
papers were finalised. So,
our possible actions are to await the views of the petitioner
before deciding what action to take—whether we take it any
further.
|
[44]
Janet Finch-Saunders:
I think Bethan Jenkins had been a
champion and an advocate, really. Just to highlight just how poorly
off we are in Wales for services for children with eating
disorders, I ended up with one of my constituents there—their
child was in Stafford. Again, we talk about the devolution
process, and 19 years down the line we still do not have a
facility or a treatment centre and it’s really, really
difficult to access services.
|
[45]
David J. Rowlands: We note again that this petition came in
on 17 July 2012. So, I think it may be best if we wait to see
whether the petitioner is going to wish to take this action any
further. Should we do that?
|
[46]
Janet Finch-Saunders: I think we should support this
petition and the petitioner because it’s not as if
they’ve brought a petition here that we don’t know.
We’ve spoken about it in Plenary, we’ve asked
ministerial questions, we’ve attended cross-party groups.
I’ve been here six years and I haven’t seen any real
improvements to the provision in Wales. We’re so far behind
England and children are suffering—boys and girls.
|
[47]
David J. Rowlands: So, what action do you advocate that we
actually take with regard to this?
|
[48]
Janet Finch-Saunders: I think we should write back to the
Cabinet Secretary and ask what, in terms of their own strategic
planning—. You know, do they have any plan? I’d heard
that there was one—again in north Wales—coming forward,
but we haven’t heard any—. You hear these things. It
would be nice to see where the Cabinet Secretary sees some priority
for actually putting in—I’m not going to say ‘all
singing, all dancing’; that’s politically incorrect,
because this is a really serious disease and can actually stop all
future development of the child as they’re growing.
It’s one of the worst illnesses a child can experience when
they’re not taking in nutrition and, in some cases,
hydration. We need to really be flag-bearers. The numbers that
suffer are significant.
|
[49]
David J. Rowlands: Okay. So, are we agreed that we’ll
write to the Cabinet Secretary—
|
[50]
Janet Finch-Saunders: Yes, and we want a strategic plan.
|
[51]
David J. Rowlands: —and ask for some strategic plan
with regard to what they hope to be doing with regard to the eating
disorder services?
|
[52]
Neil McEvoy: I’d like more detail as well, because
it’s a very bland response. You know, four extra teams. What
is the capacity of that? What does that money buy? I’d like
to know how many people they’re actually helping. It mentions
CAMHS and anyone that’s worked in education or any sector
like that knows—
|
[53]
Janet Finch-Saunders:
Nightmare.
|
[54]
Neil McEvoy: —that it’s absolutely impossible to
get appointments, almost, within a reasonable period.
|
[55]
Janet Finch-Saunders: I feel that this petitioner has been
fobbed off over the years, and I think we’re a fairly new
committee and I think we want to take these matters seriously.
|
[56]
David J. Rowlands: Okay. Fine. So, we will do that, but we
will also, I think—. I think, as Janet has mentioned, that
this petitioner has probably lost interest in it because of the
inaction previously. So, I think that it would be advisable that
we, again, go back to the petitioner and tell her that we take this
matter very seriously and that we’re taking it up with the
Cabinet Secretary.
|
[57]
Janet Finch-Saunders: Can I just ask—? Has there been
an inquiry ever from this committee into eating disorders in
adolescence?
|
[58]
Ms Thomas: It was before my time, but Helen Missen, the
petitioner, did come in to give evidence to the committee at one
point—and the Minister did—but no report was ever
produced. So, the petition was brought back to this committee for
further consideration and, in doing that, we asked for an update,
and that’s where we’re at now.
|
[59]
Janet Finch-Saunders: Okay. Do you know when she came in to
give evidence?
|
[60]
Ms Thomas: Probably 2013 or 2014.
|
[61]
Janet Finch-Saunders: So, it’s a while. Can we not
actually reopen this? Neil, what do you think—and
Mike—about maybe having more evidence, more facts and figures
on the table so we know where we’re going and we know what
we’re talking about?
|
[62]
Neil McEvoy: Yes.
|
[63]
Mike Hedges: Let’s get the response first. We’re
writing to get a response. Let’s get the response and then
decide where we go next. Let’s do
it in stages.
|
[64]
Janet Finch-Saunders: Okay. As long as we don’t waste
another five years, not actually getting anywhere.
|
[65]
David J. Rowlands: No, let’s wait for the response. I
think Mike is right in that. Then, as you say, given whatever the
text of that response is, we’ll make a decision then as to
how we take the matter forward. But we won’t leave this
wither on the vine, as such.
|
[66]
Janet Finch-Saunders: Fantastic. If we can have it at the
back of our minds that this might be going to an inquiry—
|
[67]
Mike Hedges: Well, depending on what we want to do, without
prejudging it, we might ask for a debate in the Assembly on it, but
we need to go through the stages first. What I would say is that
when I sat in your seat, David, I was very keen on doing one or two
things—you either do something with the petition or you close
it. Leaving it to sit there for years and years and years is of no
good to anybody.
|
[68]
David J. Rowlands: No, no, absolutely. We know that, and we
certainly won’t allow that to happen.
|
[69]
Janet Finch-Saunders: Thank you, Chair.
|
[70]
David J. Rowlands: Are you happy and content with that?
Fine.
|
[71]
We’ll move on now to ‘Reinstate Corwen’s Mobile
Dental Service’. Now, I think that if you read the
information with regard to this, it appears that Betsi Cadwaladr
university health board are going to put a replacement unit in
place, and the only questions would be that we could ask Betsi
Cadwaladr for a likely timescale for the unit, or we could, in
fact, on the evidence that the petitioners seemed to be satisfied
with the outcome of their petition, close the petition.
|
[72]
Mike Hedges: I’d suggest we close the petition if the
petitioners are happy.
|
[73]
David J. Rowlands:
Yes. So, the decision is that we
should close that petition. Thank you.
|
[74]
The next one is ‘Restoration of Inpatient Beds, Minor
Injuries Cover and X-Ray Unit to the Ffestiniog Memorial
Hospital’. This was submitted by Geraint Vaughan Jones and was first considered on 17 June
2014, having collected a very large sum of 2,754 signatures. Now,
the decision was made—. The committee last considered the
petition on 9 May, and agreed to write to Besti Cadwaladr UHB. We
asked for a number of points to be taken into account. A response
was received from the chief executive of Betsi Cadwaladr on 30 May,
and we also had a response from the Chair of the Health, Social
Care and Sport Committee on 6 July. Further comments from the
petitioner have been made available to the committee. The committee
will consider the approach it wishes to take once the findings of
the final report of the parliamentary review of health and social
care in Wales are published at the end of this year. The health
board has provided a detailed response setting out the provision
for the area. It’s their view that this demonstrates the
board’s commitment and progress to date in meeting the
recommendations set out in ‘Healthcare in North Wales is
Changing’. So, our possible actions are, given the amount of
detailed correspondence received from all parties over the last 3
years, to prepare a summary of the committee’s consideration
of the petition, to include its reflections and conclusions and
share it with the Welsh Government and Betsi Cadwaladr UHB early in
the Autumn term.
|
[75]
Mike Hedges: Can I suggest we share it with the petitioners as
well?
|
[76]
David J. Rowlands:
Yes.
|
[77]
Mike Hedges: I’m happy with that, but if we could share it
with the petitioners so nothing is happening without them
knowing.
|
[78]
David J. Rowlands:
Fine. Thank you.
|
[79]
The next petition is ‘Close the Gap
for Deaf Pupils in Wales’. This petition was submitted
by the National Deaf
Children’s Society and was first considered by the
committee in May 2013.
|
[80]
‘The National Deaf
Children’s Society Cymru presents this petition today as it
is both Deaf Awareness Week’—
|
[81]
and this was some years ago,
obviously—
|
[82]
‘and two years since 55 AMs
pledged to take action to close the gap for deaf pupils. Still,
Welsh Government statistics demonstrate significant attainment gaps
between deaf pupils and their peers.’
|
[83]
Would you like to make any comments
on that?
|
[84]
Janet Finch-Saunders:
This is another one I think we should be
driving through.
|
[85]
Mike Hedges: I think that they’d like—the
National Deaf Children’s
Society—to meet with the Minister and with ministerial
officials to take it forward. Perhaps we can write to the Minister
asking if the Minister will do that. If the Minister does that,
then we can close the petition. If the Minister doesn’t, then
we have to come back and decide what we want to do.
|
[86]
David J. Rowlands:
Yes. It’s true to say the
Minister’s offered to meet NDCS to discuss the issues raised
by the petition, and NDCS have indicated that they would like to
take up this offer. So, the possible actions at the moment are
suggest that the NDCS contact the Minister’s diary secretary
directly to arrange a meeting and ask them to report back to the
committee following that. Are we all content? Yes.
|
09:30
|
[87]
The next petition is ‘Asbestos in
Schools’. This petition was submitted by Cenric
Clement-Evans and was first considered in December 2013, having
collected 448 signatures. The committee last considered the
petition on 23 May and, given the time that has passed since
evidence was taken by the previous Petitions Committee, agreed to
write to the Cabinet Secretary for Education to seek the
Government’s current position on the issues raised by the
petitioner. A response was received on 16 June. The petitioner
contacted the clerking team to express his gratitude to the Cabinet
Secretary for her considered response and broadly welcomed what was
outlined. However, given the short amount of time for him to
respond to such a detailed letter, he would prefer to prepare a
considered response over the summer.
|
[88]
So, the possible action is to await
further comments from the petitioner and consider the petition
again early in the autumn term. Are we all agreed on
that?
|
[89]
Janet Finch-Saunders:
I do have a concern, though, on the
letter back from the Minister. It says here,
|
[90]
‘Accessing Asbestos
Information Online. As I explained to Mr Clement-Evans when I met
him on 6 October 2016, I do not intend to require local authorities
to make information about asbestos management available online, as
this information is already available on request.’
|
[91]
I have tried accessing information as to
the buildings in my own constituency. I can tell you, if I’m
finding—. I’m pretty adept at finding information out,
and putting freedom of information requests in, but it is very,
very difficult. I think parents, teachers, parents of
pupils—they have a right to know.
|
[92]
I sadly lost one of my constituents who
was a teacher, and the coroner’s report was quite categorical
that the exposure to asbestos—. We have a duty as elected
politicians here to ensure that—. You know, there’s
mention here of all this money that’s going to be spent on
the twenty-first century schools, and it’s wonderful for
those schools that are a new build and everything, but we have
hundreds of schools and public buildings—public toilets,
even. But as regards this, I think that somebody in this Government
needs to be fairly robust in their approach on this. We can’t
afford for people to be unknowingly or unwittingly teaching in a
school—. If my children were still in school and I thought
for a minute there was asbestos in the school, I would want to
know. I have a right to know. So, we do need to turn the volume up
on this one.
|
[93]
David J. Rowlands:
Right, okay. So, shall we await further
comments from the petitioner in the first instance?
|
[94]
Janet Finch-Saunders:
Yes.
|
[95]
David J. Rowlands:
But we will note that we will be taking
this matter further, having had those comments.
|
[96]
Janet Finch-Saunders:
Thank you.
|
[97]
David J. Rowlands:
The next petition for us to review is
‘Protect Special Educational Needs’. This petition was
submitted by Nicola Butterfield and was first considered on 13
December 2016, having collected 553 signatures. It was calling on
the Welsh Government to provide for special educational needs, and
that the funding for that should be ring-fenced. I think the
Cabinet Secretary has said that—. The petitioner was informed
that the petition would be considered by the committee, but had not
responded when the papers were finalised, nor has she responded to
the previous request for comments. The chief executive of Port
Talbot stated that he can see no basis for the petitioner’s
observations that the system is open to abuse and not fit for
purpose. He also reiterated his offer to meet with the petitioner
to discuss her concerns.
|
[98]
Mike Hedges: Shall we write to the petitioner telling the
petitioner that—that the chief executive is prepared to meet
with them?
|
[99]
David J. Rowlands:
I think what we’ve said here is
that the possible action is to write to the petitioner to ask
whether she would like to take up the chief executive’s offer
to meet his officials locally, and we could also write to the
Minister for Lifelong Learning and Welsh Language to ask for
further details about the western bay regional partnership board,
and how the petitioner could access the service if appropriate.
Given the Minister’s previously stated position that
core Welsh Government funding provided through the local government
settlement is unhypothecated, it is unlikely that the
petitioner’s aim of ring-fencing funding will be achieved.
So, the possibility is that we could close the petition. I think
that we ought, in this case, to write and ask for the petitioner to
meet with the chief executive.
|
[100] Mike
Hedges: Like a lot of things, getting people to meet to discuss
these things—really our major role is to try and get the
meeting of minds between those who have got a petition and those
who can solve their problems.
|
[101] David J.
Rowlands: Yes. Fine. Are we all content with that?
|
[102] Mike
Hedges: Yes.
|
[103] David J.
Rowlands: Fine, thank you. The next petition is ‘Trees in
Towns’. This petition was submitted by Coed Cadw Woodland
Trust and was first considered on 8 March 2016, having collected
2,258 signatures. The petitioner was concerned with regard to the
tree canopy in suburbs and in conurbations in particular. The
committee last considered the petition on 23 May and we agreed at
that time to write to the Cabinet Secretary for Environment and
Rural Affairs to ask what increase in tree cover in urban areas has
been achieved in the last five years, and whether other plant
species are also used for a similar purpose, and we would seek
views from the petitioners on the response received. A response was
received from the Cabinet Secretary on 22 June. We had further
comments that have also been received from the petitioner.
|
[104] I think the
Cabinet Secretary and Natural Resources Wales have accepted that
there’s been an overall trend of a decrease in the percentage
of tree canopy in urban areas in Wales. The Cabinet Secretary
considers increasing tree canopy coverage in Wales’s towns
and cities a priority for the area statement process that will be
contributed to by Natural Resources Wales.
|
[105] So, the possible
actions is that we write to the Welsh Government to ask if they
will consider increasing canopy coverage in Wales’s towns and
cities as a priority for the area statement process that will be
contributed to by Natural Resources Wales.
|
[106] Mike Hedges: Can you also send a copy of
that petition on to the climate change committee?
|
[107] David J.
Rowlands: Yes, fine.
|
[108] Mike
Hedges: We’re looking at trees at the moment, so at the
very least, they can add it as an appendix to their report.
|
[109] David J.
Rowlands: Fine. Yes. Are we all in agreement on that?
|
[110] Janet
Finch-Saunders: Yes.
|
[111] Neil
McEvoy: Yes.
|
[112] David J.
Rowlands: Fine, thank you. The next petition refers to the
testing of cattle for TB. The petition was submitted by Nigel
Bowyer and was first considered on 21 March 2017, having collected
309 signatures. What he wanted was the Welsh Government not to have
routine testing of cattle every six months. It currently is at 12
months. He has received information from the Cabinet Secretary that
there will be no routine testing of cattle every six months but
that the testing would remain and will only be coming into effect
where herds are at the highest risk of becoming infected. The
petitioner has welcomed the announcement. So, the invitation is
that we close the petition, given that it appears to have achieved
its aim.
|
[113] David J.
Rowlands: Do we all agree with that? Yes. Fine. Good. So, we
will close that petition.
|
[114] The next
petition is ‘Strengthening the Legislative and Regulatory
Framework Surrounding Waste Wood Processing Facilities’. The
petition was submitted by Alexander Williams, having collected 232
signatures and was first considered on 23 May 2017. I think this
petition was probably instigated by an incident of a fire at South
Wales Wood Recycling Ltd. The committee last considered the
petition on 23 May and agreed to write to the Cabinet Secretary for
Environment and Rural Affairs to share the comments made by the
petitioner and ask for a further response to these. The Cabinet
Secretary’s response was received on 22 June. The petitioner
has submitted further comments, which are available in the public
papers. So, the Cabinet Secretary has provided a detailed response
to each of the points raised by the petitioner, and it seems that
one of the comments by the petitioner was that, where they did not
comply with existing rules, they seemed to be raising the tonnage
from 25,000 tonnes to 125,000 tonnes, exceeding the original
permit. So, the possibilities for us, I think, and possible
actions, are to write to the Cabinet Secretary, seeking her views
on the petitioner’s latest comments, before deciding how to
take the petition forward.
|
[115] Janet
Finch-Saunders: Yes.
|
[116] David J.
Rowlands: Fine. The next petition is to reopen the Cwmcarn
forest drive in Easter 2018. I must declare a slight interest in
this, in that I attended a meeting of the petitioners a little
while ago, and I was supportive of their attempts to get that drive
open. The petition was first submitted by the Friends of Cwmcarn
Forest Drive, and was first considered on 13 June 2017, having
collected 1,450 signatures. The committee considered the petition
for the first time on 13 June, and agreed to write to the Cabinet
Secretary for Environment and Rural Affairs to ask if the Welsh
Government has considered providing funding to NRW to support the
reopening of the forest drive to vehicles, and to highlight the
petitioner’s concerns about the timescales for the proposed
study. The Cabinet Secretary’s response was received on 28
June. I think the committee has had time to review her response. It
says that forest drive will be considered once the study into
commercial viability has been completed, but that no commitment in
respect of funding support will be given until then. The petitioner
is disappointed that the Welsh Government will give no commitment
to funding for the reopening of the drive at this time.
|
[117] So, the possible
actions that are open to us are to write to the NRW, to ask for
more details of the time frame for the feasibility study, and seek
their views on the petitioners’ comments, relating to funding
for other facilities for mountain bike users. Are we happy to do
that? We’re happy to go with the possible actions for
that.
|
[118] The next
petition is ‘Unconventional Oil and Gas Planning
Applications’. The petition was submitted by Arfon Jones, and
was first considered on 22 September 2015, having collected 1,254
online signatures and 293 paper signatures. The petitioner made the
point that the current direction does not apply to underground coal
gasification. The committee last considered the petition on 13
June, and agreed to write to the Cabinet Secretary for Environment
and Rural Affairs, and the Cabinet Secretary’s response was
received on 28 June. The petitioner was given a very short
timescale in which to comment, but had not responded when the
papers were being finalised. The Cabinet Secretary and her
officials are currently assessing the implications of the transfer
of the oil and gas licensing system to Wales. So, our possible
actions are to await further comments from the petitioner and/or
write to the Cabinet Secretary asking her to update the committee
when she has determined how the Welsh Government will approach the
handling of existing licences and future policy.
|
09:45
|
[119] Mike Hedges:
‘Yes’ to both.
|
[120] David J.
Rowlands: So, I think we should do both of those possible
points of discussion.
|
[121] Right, given the
time factor now, what I think we shall do is we shall defer these
further petitions until after the next session. Are you in
agreement with that? Yes.
|
09:47
|
Sesiwn Dystiolaeth: P-04-682 Sgrinio Rheolaidd ar gyfer
Diabetes Math 1 mewn Plant a Phobl Ifanc
Evidence Session: P-04-682 Routine Screening for Type 1 Diabetes in
Children and Young People
|
[122] David J.
Rowlands: Good morning. Bore da. Welcome to the evidence
session with regard to the routine screening for type 1 diabetes in
children and young people. This is when the committee agreed to
take evidence from the petitioners: Diabetes UK, Diabetes UK Cymru
and the Welsh Government on this petition, as well as the
petitioner, Beth Baldwin.
|
[123] So, I welcome
the guests to the committee this meeting. We have Libby Dowling
from Diabetes UK; Sara Moran from Diabetes UK Cymru; and,
obviously, we have Beth Baldwin, who is the petitioner in this
matter. Can I say that the committee offers their sincere
condolences to you, Beth, on the loss of your son, Peter, in such
tragic circumstances? Can we commend you on your courage in
bringing this petition forward?
|
[124] Ms
Baldwin: Thank you.
|
[125] David J.
Rowlands: And Beth—. Can I refer to each of you by your
Christian names? Are you happy with that? So, Beth, you indicated
to us that you would like to make some comments with regard to
this, so please do so.
|
[126] Ms
Baldwin: My son, Peter, turned 13 on 10 December 2014. He loved
life, school and his friends. He was a fit and healthy teenager who
had the world at his feet. He’d just been to Germany with the
school and had come back with a winter cold. On New Year’s
Eve, he was very unwell, so we visited our general practitioner.
The GP diagnosed a chest infection and gave us antibiotics. No type
1 test was offered or considered. I explained that Peter was
sleeping lots and drinking lots, which we now know are two of the
signs of the 4Ts. Twenty-four hours later at 16.30 on New
Year’s Day, we called the out-of-hours service and explained
that we were very concerned about Peter, who was deteriorating
fast—laboured breathing and delirium. Insisting that this was
very urgent, we were transferred to 999, which was engaged for a
short time. I asked for an ambulance, which I had to be very direct
about. The operator kept asking if this was deemed necessary. Thank
goodness I insisted and stuck to my guns. Many at this point would
have given up. The rapid-response paramedic arrived shortly, and
the first thing he did after giving Peter oxygen was to prick his
finger. He diagnosed Peter on the spot with type 1 diabetes, and it
took less than 30 seconds. The paramedic called an ambulance and,
within 15 minutes, we were in the resus department at the Heath
hospital, Peter was being given the right care. He fought for six
days, but his poor body couldn’t cope and he never recovered.
Diabetic ketoacidosis can be fatal.
|
[127] I would like to
say that staff at the University Hospital of Wales were absolutely
amazing and did all that they could. Had the GP pricked
Peter’s finger we’d have had a 24-hour head start and
he would have had a chance to recover from this DKA. This was
preventable. We have the technology. It’s not expensive.
There are finger-prick monitors in all GP practices—why
aren’t they being used more? Why is type 1 diabetes not on
the radar when unwell children visit GPs? We call upon you, the
National Assembly for Wales, to urge Welsh Government to introduce
the four Ts as a routine question for primary care when children
are presented ill to prevent another family going through this
tragedy. You can introduce protocol for type 1 testing and raise
the profile to check for type 1 diabetes for anyone presented with
illness.
|
[128] Over the past
two years, we have learned about policies and pathways that are in
place. We’ve learned about guidelines. We’ve learned
that guidelines can be interpreted in many different ways. The
system is set up to give little accountability or responsibility
when guidelines are not followed. This petition has immediate,
short- and long-term aims: sharing Peter’s story and
introducing type 1 testing as part of protocol, refreshing GP and
primary care awareness, annual e-learning for the dangers of
undetected type 1 diabetes, working in partnership with
organisations to create awareness campaigns. This petition is to
prevent the 25 per cent of children who are diagnosed at a critical
state with type 1 diabetes. Vigilance and testing can save
lives.
|
[129] Changes have
already been made, and we’re really pleased. Training took
place at out-of-hours after my call was listened to. They audit
calls to ensure handlers do not act as gatekeepers and waste
critical time. With each new type 1 diagnosis in Cardiff and the
Vale an investigation is carried out to check the pathway and
timescales to this diagnosis, and this information proves really,
really helpful. There is an EDDY study campaign, which is looking
for round 2 funding into awareness campaigns. Our Know Type 1 video
has been viewed thousands of times and has been included on the
training agenda for trainee GPs in Wales very recently—over
400 trainee GPs.
|
[130] We as a family,
with the support of the type 1 army, ambassadors of a
community—thank you so much—with Diabetes UK Cymru, we
continue to do—
|
[131] David J.
Rowlands: Beth, if you’d like to pause at any time and
take a drink, by all means do that.
|
[132] Ms
Baldwin: Thank you. We’ve done as much as we could do,
and we will continue to do everything we can do. You, as Welsh
Government, have the power to enforce changes, to govern, to
legislate. You can help us to save lives. You can do research. You
can monitor. You can evaluate. You can ask the questions and you
can make others ask questions. You have power and influence and are
in a position to help us to prevent late diagnosis for this one in
four children, and give those a fighting chance who are diagnosed
in the future.
|
[133] In the last 10
days, I’ve had two e-mails thanking us for our campaign,
which has led to the swift diagnosis of an 11-year-old boy and a
16-year-old girl locally. We had, and still have, great support
from the fourth Assembly Petitions Committee. We have support from
the current healthcare committee and the children’s
committee, and many more AMs. We are currently awaiting a date with
the health Minister.
|
[134] Our community
supports us in all we do. Many are here today—thank you. We
asked the committee to ensure no other family suffers like we do,
because it is unnecessary. My son Peter could have been saved. He
should have been given a chance. Four questions that lead to a
finger-prick test would have saved him. You have the power to make
this happen. We have the equipment. Guidance doesn’t go far
enough. Thank you.
|
[135] David J.
Rowlands: Thank you, Beth, for that. It’s obvious to all
of us the distress this causes you. Again, can we thank you for the
courage that you’ve shown in coming here today?
|
[136] Ms
Baldwin: Thank you.
|
[137] David J.
Rowlands: Now, do either Diabetes UK or Diabetes Cymru want to
make any comments at this particular time with regard to that?
|
[138] Ms Moran:
Yes, thank you, Chair. I think I’d just like to provide an
overview of numbers, stats and figures for Wales, if I may, just to
give the Petitions Committee an idea of the scope of the issue. So,
there are approximately 1,400 children and young people with type 1
in Wales. We hear frequently from families that the diagnosis
process was particularly traumatic. The stat is usually one in five
of those children or young people are diagnosed at the critical
stage of DKA. We know that a report is coming out in two
days’ time, and that has increased to one in four. So,
we’re looking at a quarter of these children and young people
being diagnosed in a very late stage, which is life-threatening.
That’s coming out on Thursday.
|
[139] There are ways
that this can improve. We’ve spoken to several clinicians
over the years and they are optimistic that things can improve.
It’s challenging, but we believe we can make progress in
Wales. I’d just like to defer to my colleague, Libby, just to
give an overview of the condition. Libby is a paediatric nurse, so
she’ll be able to answer any clinical questions that you
might have.
|
[140] Ms
Dowling: Thank you. I’m not sure how familiar you are
with type 1 diabetes, but it’s when there’s a complete
absence of insulin in your body. Insulin is the hormone that we
need to convert glucose from the food we eat into energy for our
bodies to use. So, if you don’t have any insulin, you digest
the food, the glucose goes into your bloodstream, but you need
insulin to get it from your bloodstream into your body cells so you
have the energy to function. Obviously, without insulin, the sugar
stays in the blood, the blood sugar rises, and you get the symptoms
that Beth has described—going to the toilet a lot to pass
urine, feeling incredibly thirsty, obviously being very, very
tired, because you’re not getting any energy, and losing
weight. So, these we term the four Ts—toilet, thirsty, tired,
thinner—and it’s crucial that people, parents, carers
are aware of those, but also that GPs are aware that these are
signs of type 1 diabetes. Because if we don’t pick it up at
those early stages when you’re showing those early signs, we
get to the situation that, unfortunately, Peter was in, where
you’re extremely unwell and your body starts to fail.
Frankly, if you can pick up type 1 diabetes early, you can stop
that happening.
|
[141] David J.
Rowlands: Fine, thank you. Now, in order to further our
consideration, obviously, of this petition, we would like to ask
some questions of you. Some of those you might have touched on in
your presentations now, but are you content that we should ask you
questions on this matter? Fine. So, first of all, could you tell us
why early diagnosis of type 1 diabetes is so critical with regard
to this disease?
|
[142] Ms
Dowling: That’s because, if you can pick it up early, a
child doesn’t become very unwell. If the diagnosis is
delayed, you get a child who is extremely unwell, with breathing
difficulties, possibly even in a coma. This is called diabetic
ketoacidosis, when basically your blood sugar levels have gone so
high your body has become acidotic. You certainly need hospital
admission for that, and sometimes you need intensive care admission
as well.
|
[143] So, not only is
that life-threatening, but, even if the life is saved, it’s
an incredibly traumatic experience for a child and their family to
be hooked up to drips, sometimes even ventilated. We’re
talking really intensive medical care here that might be necessary.
It’s not only incredibly traumatic for the child and family,
but also incredibly expensive for the health service. Whereas, if
you pick it up early, with a finger prick early on, then you can
start a child on insulin injections quickly, you stop all that
happening and you support them to manage their diabetes before they
get very sick.
|
[144] David J.
Rowlands: Fine. Thank you for that. Janet.
|
[145] Janet Finch-Saunders: Thank you. Good morning. Twenty per cent of children
with type 1 diabetes are not diagnosed until they are in
diabetic ketoacidosis, DKA. What are the barriers to early
detection of type 1 diabetes, particularly in the primary care
setting?
|
10:00
|
[146] Ms Moran:
Well, we know there are barriers around awareness, access to
equipment and awareness of what action to take. So, if I just
summarise the three of those, in terms of awareness, we do hear a
lot from families who advise us that the primary care staff
weren’t very aware. It was only when they got to secondary
care that any action was taken—well, not ‘any
action’, but life-saving action in some cases. But also,
there’s low awareness amongst the public. People aren’t
aware of the symptoms. They’re not presenting to their GP,
asking for these tests to be carried out. There are also issues
around access to equipment, as Beth touched on in her statement,
that every GP should have a blood glucose monitor. Certainly, there
should be one in each surgery. We don’t think that’s
the case, although we can’t be sure. No equipment audit has
been undertaken in Wales. So, yes, the access to that equipment,
and not just that, but, once they’ve got the equipment, the
confidence in being able to use it, in interpreting the results,
and in what action to take, depending on those results. We hear a
lot from healthcare professionals in secondary care that incorrect
action was taken. The wrong blood test was carried out, or even a
blood test scheduled for the following week, or being told to come
back in a week’s time, deferring it to a more junior
colleague, who might not be available on that day. So,
there’s a wealth of issues around those, and each of those
present as a barrier.
|
[147] We do know more
about services in secondary care, especially the answers that the
committee has received from each health board, and those have been
particularly insightful and they’ve been collated for the
first time in Wales, which has been very, very enlightening for us.
But the fact remains that most people present to their primary care
services first, and that is where the grey area is, if you like,
and the lack of standardisation and the approaches. So, those are
the key barriers, really: awareness, equipment, and then what
action, what pathway, to take.
|
[148] Janet
Finch-Saunders: Just two points I’d like to pick up
on—one is the fact that there’s a lack of awareness of
how many, say, of our GP surgeries have the ability to be able to
test. I’d have thought that was just standard practice.
|
[149] Ms Moran:
Yes, I agree.
|
[150] Janet
Finch-Saunders: And then it’s how can we—is it
though the schools—build that awareness in parents and
children themselves, because I know that, from an early age, now,
children quite often will take themselves off to the GP. How do we
build that awareness up?
|
[151] Ms Moran:
Well, Diabetes UK have just launched a campaign in June, called the
Know Type 1 campaign, which really does push the four T’s out
there. Diabetes UK launched the four T’s campaign several
years ago, which Libby was involved in, and we know that awareness
in the public went up from 9 per cent to 14 per cent at that time.
So, it is doable. It is achievable. And I think Diabetes UK’s
more recent campaign, which is funded by the Baldwin family, will
go a long way in Wales into doing that, and we are evaluating it as
well. But it is the two-ply, really, of having the public awareness
as well as healthcare professional awareness, and that’s what
we need to do.
|
[152] Janet
Finch-Saunders: May I ask, is there an app? Is it used at all?
Because I know a lot of campaigns now and charities, health
charities—leading health charities—are using social
media to get it out there more. Is there a way so then it brings it
to the awareness of the health professionals and indeed to the
public?
|
[153] Ms Moran:
Yes, absolutely. We’ve got a number of measures that
we’ll be carrying out to contact healthcare professionals.
We’ve already seen some of our supportive healthcare
professionals going out to GPs to present the campaign video, which
I think you’ve all seen, as well as the infographics, et
cetera. So, there’s a lot happening, but it does tend to rely
on individual clinicians, very much so, as well as the third
sector. I think we’ve all got our part to play—
|
[154]
Janet Finch-Saunders:
Of course, yes.
|
[155] Ms Moran:
Of course, and, when you look and speak to individual
clinicians’ activities, it is very much them driving it.
It’s not systematic. It’s very much them taking their
own initiative, perhaps even doing it as part of their QI, their
personal development within their role, and it’s very much up
to that individual to take the lead. As Beth has mentioned to me
several times, if that person leaves that post, quite often
you’ll see that drop off, won’t you, so—
|
[156]
Janet Finch-Saunders:
No consistency.
|
[157] Ms
Moran: Exactly. So, it’s not in systems.
It’s not—. For example, type 1 diabetes, it’s not
in baby packs in Wales. It’s not in the red book that new
mothers get. That’s only done very locally by our campaigners
at grass-roots level speaking to their GP surgery and asking for
the four Ts poster to be put in the pack. It’s really not
driven centrally at all, unfortunately. Other conditions like
meningitis: we all are aware of the symptoms. It’s never
received that attention.
|
[158] Janet Finch-Saunders: Okay, thank you.
|
[159] David J.
Rowlands: Mike.
|
[160] Mike
Hedges: Yes, I think that—. I know we’ve talked
about the four Ts. From my experience, two Ts are very easy to
identify: tiredness and thirst. They’re very easy to pick up.
I used to teach in a college and I had a student who was
continually tired and was drinking water almost continually, who I
convinced to make his way to the doctor, who really started off
treating him as a ‘worried well’ rather than actually
dealing with it. We can do what we like; Welsh Government can have
whatever policies they like and health boards can have it; until we
get GPs to actually start treating it—. Once you have those
two easy-to-identify symptoms—. Because you don’t
notice people getting thinner over a period of time, or, hopefully,
people don’t notice me getting fatter over a period of time.
But you don’t notice that, do you, if people are losing small
amounts of weight over a period of time? But thirst and tiredness
are something you notice because it’s something that becomes
apparent. I mean, what do we need to do to get GPs to just take
those two easily identifiable items and actually just do a test
following those?
|
[161] Ms
Baldwin: Can I just say I think all GPs need a monitor, and we
know that pharmaceutical companies often give the monitors away for
free because it’s the test strips that cost money and even
they are pennies? We’re not talking about MRI scanners or
anything here. This is a monitor that they give away for
free—basic. If every single GP had one on the desk with the
stethoscope and the temperature gauge and their normal equipment,
it would be in their mindset, on the radar—check, check.
It’s as simple as that. It needs to be there: four Ts, sign,
on the monitor—check.
|
[162] David J.
Rowlands: Neil.
|
[163] Neil
McEvoy: Just listening to you, really, I suppose I’d like
to thank you as a parent, really, for enlightening us and everyone.
Is there any good reason why this isn’t already being done?
It just seems common sense, really. Is there some impediment to
driving this out as a centralised policy?
|
[164] Ms Moran:
Not that we’re aware of. It’s in the diabetes delivery
plan, but some of the actions are attributed to the third sector in
that so it’s not—. You can’t point to something
and say, ‘Right. That’s where it is and that’s
where it should be done.’ It is covered by NICE guidelines,
but as Mike touched on, really, policies and procedures can only go
so far. What we really want to see happen as part of this is that
GPs are asking the questions that they see the symptoms, see one or
more of the symptoms, and carry out the finger-prick test. All four
symptoms don’t have to be present. It can be one or more, and
we really want to see GPs being proactive in asking and
probing—asking these questions that will draw out the answers
from parents who might not be aware of the symptoms themselves.
|
[165] Neil
McEvoy: You said the awareness-raising campaign has put it up
to 14 per cent.
|
[166] Ms Moran:
The original wave. I think it was in—.
|
[167] Ms
Dowling: In 2012, we launched the four Ts campaign, and it was
following that that awareness went up, and we also have reports
where similar things have been done in other countries. When you do
these types of campaigns, they work.
|
[168] Neil
McEvoy: Yes. Do you think there’s—? What scope is
there to promote this further? Has it been relaunched, in June?
|
[169] Ms Moran:
That’s right, yes. So, we’ll be promoting that amongst
healthcare professionals. We’ve also got an e-learning module
available. It’s not mandatory, unfortunately, but that is
available as well to healthcare professionals, and Diabetes UK have
a suite of materials that are available to healthcare professionals
that they are able to use in cluster training, and they can also
watch the campaign video, which is really succinct in highlighting
the symptoms. So, there are a number of activities being carried
out by Diabetes UK to that end. Where the gaps are, really, is in
further investigating primary care in terms of, you know—. We
could easily, I think, look at how many tests are being carried
out. We don’t have that information. A few of the health
boards carry out a serious case review or a DATIX report when a
child is diagnosed and it hasn’t gone as smoothly as it could
have, or even when it’s gone well, they have that dialogue
between secondary and primary care and that sort of thing can be
monitored. But that’s where the gaps in our knowledge are at
the moment.
|
[170] Neil
McEvoy: Right, okay. When did the scheme start in North
Carolina?
|
[171] Ms Moran:
I think it was two or three years ago. And, again, that’s
health visitors going in to meet with families and to promote the
four Ts there, so that’s another nice example of what can be
done.
|
[172] Neil
McEvoy: Yes. Because I think it’ll be worth, maybe,
getting those data as a committee and maybe pushing that
forward.
|
[173] David J.
Rowlands: Yes. Thank you, Neil. Okay, Mike.
|
[174]
Mike Hedges: You’ve seen the Welsh Government and local
health boards’ responses. Are you happy with those, or do you
have any criticism of them?
|
[175]
Ms Baldwin: Secondary care, in our experience with Peter, the
Heath hospital were amazing and I’ve got no complaint with
them. Sara has a synopsis, I suppose, of the responses from
secondary care. As great as that is and will be for the charity,
and it’s the first time in Wales this information has been
gathered, our main focus is on the diagnosis, which in 99 per cent
of cases is on primary care, so we would really like to see a
similar thing done with primary care and find out how many children
present ill to the GP each week; how many of those do they consider
testing; and, how many they actually test. You know, these things
can be—.
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[176]
Mike Hedges: I think it really comes down to a matter that I talk
about a lot in lots of different cases: we have Government policy,
we have health support policy, and then we have the person who is
at the sharp end who is there doing something. You can have all the
policies in the world, and everybody can say how good these
policies are, but if the person at the end of it doesn’t
implement them, they are not worth the paper they’re written
on. But—I’m not putting words in your mouth—would
you like a position where the actions are being reported—I
think it’s something you said earlier just to take it on to
the next stage—that GPs do an annual report of how many tests
they’ve done and how many were positive, so that you can
indicate which GPs are doing it, and more importantly, it’ll
concentrate their minds? Nothing concentrates people’s minds
like an annual report. I’m sure that works for you inside
your organisation; it certainly used to work for me in education,
and I think it works for most people in most employment. Having to
produce an annual report and having to put numbers in there
concentrates your mind during the year to work towards it. Would
you see something like that being of benefit?
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[177]
Ms Moran: It certainly would fill a gap in knowledge. I’m
not sure whether that would be the easiest or most obtainable
format, but certainly any reporting would assist at this stage. I
do take your point about procedures, Mike, but I do think
it’s important that there is a clear policy and procedure at
central level to show that commitment to helping it as well, and
that would filter down. But, I do think, in terms of the Welsh
Government’s response to the committee, I know that it was
very distressing for the family to read that the Cabinet Secretary
was unable to meet with them, for example, and I
think—
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[178]
Janet Finch-Saunders:
I’m coming onto that point right
now.
|
[179]
Ms Moran: And I think having that commitment at the start does
go a long way.
|
[180]
Janet Finch-Saunders:
Thank you. During your introduction you
said we are still waiting for the Minister—of course, now we
call them Cabinet Secretaries—but I also note in our research
paper it said:
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[181] ‘In February 2017, the Petitions
Committee agreed to write to the Cabinet Secretary for Health,
Well-being and Sport to ask if he would be willing to meet with the
petitioners to discuss the issues raised in their petition in more
detail.’
|
[182]
And I am really disappointed to have to
read this out.
|
[183] ‘The Cabinet Secretary’s response
stated: “Unfortunately, I am unable to meet with the
petitioners at this time. (…). I would draw the
petitioners’ attention to our recently refreshed diabetes
delivery plan, which sets out the Welsh Government’s Vision
for services in Wales and action by health boards to improve the
detection of diabetes.”’
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10:15
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[184]
Well, I can tell you, if I was the
Cabinet Secretary and you, and these good people here, had asked to
see me, I’m afraid I would be wanting to meet with you, and
you would not be getting a response like that from me. Chairman, I
think we should write to the Cabinet Secretary now and insist that
he has the courtesy, the manners and some goodwill towards the
valuable work that they are doing. As you’ve rightly said,
this won’t bring your son back, sadly. But you are sat there,
hoping that lessons will be learned, and no other family goes
through what you’re doing. I’m very, very annoyed that
the Cabinet Secretary has refused to meet with you, and I will
certainly do my best, if it’s through this committee or if
it’s through standing up in the Senedd, to ask the Cabinet
Secretary to spare some time to spend with you to discuss this in
more detail.
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[185]
David J. Rowlands:
I think that Janet echoes the concerns of
this committee in general that there has not been a direct response
to you as petitioners. We will be making this matter known to the
Cabinet Secretary in future. Janet, there was one other question
that you might want to ask, which is on the progress.
|
[186]
Janet Finch-Saunders:
Do you know, I’ve forgotten the
number of it. Seven, wasn’t it? Right. How should progress in
improving early diagnosis be monitored and reported? I shall
certainly be asking more questions generally of the Cabinet
Secretary, and of the health boards, because I think we all have to
work together. It’s just a pity that you have to be sat here,
but I’m glad you are, and as I say, we will all do our best
to support you in your aims.
|
[187]
But anyway, the question was: how should
progress in improving early diagnosis be monitored and
reported?
|
[188]
Ms Moran: There are a number of audits already that we
use—established audits that we have a lot of data from,
mainly the national paediatric diabetes audit, the NPDA.
That’s the report that’s coming out on Thursday.
Certainly, we could benefit from, as I said, point of care testing
in terms of reporting that. Monitoring referrals to secondary care
could be done, and also the case reviews—so, any serious
incident, in terms of reviewing that. We know of some excellent
work in Cardiff and Vale health board being carried out by Dr
Ambika Shetty, who’s a consultant paediatrician, to review
that snippet of the pathway between primary and secondary care, and
to really look at that under the microscope, and, as I said, go
back for learning where it hasn’t gone to plan, and also
praise it when it has gone right as well. So, there are a number of
things that can be done that aren’t being done at the moment
that would be of absolute benefit to this area.
|
[189]
Janet Finch-Saunders:
I just find it astounding, really, that
you’re talking about 25 per cent being very advanced before
it’s picked up in children. It just beggars
belief.
|
[190]
Ms Baldwin: And often they’ve been to the GP on numerous
occasions. When we submitted this petition we had hundreds, and I
mean hundreds, of people sharing, heart and soul, their stories of
how many times they’d been to the GP and how many times
they’d been fobbed off.
|
[191]
Janet Finch-Saunders:
And there’s a waste of resources
there that could be put to better use and potentially save
lives.
|
[192]
Ms Baldwin: Absolutely.
|
[193]
Ms Moran: It is very rare for a GP, I have to say, to diagnose
a child. It could be once in their careers, it’s thought, and
every few years they may see a child with type 1, because the vast
majority of their patients will have type 2. But it’s
absolutely critical that those questions are asked and that the
probing is done when a child has these symptoms. They’re
really common symptoms, but if they’re in extremis, and if
they’re present, as I said, one or more, just ask those
questions that would trigger the rest of the four Ts, and then
carry out the finger prick test. As you said, Janet, it’s
remarkable, really, that it’s not done as par for the course.
But, yes, it’s doable. It’s asking those questions.
It’s not just saying, ‘Oh, it’s an
infection’, ‘It’s viral.’ It’s making
sure that you cover the four Ts in conversations.
|
[194]
Janet Finch-Saunders:
Well, thank you again for everything that
you’re doing, for making us aware. Hopefully, we can
certainly take some responsibility and challenge and hold the
Government to account on your behalf.
|
[195]
Ms Baldwin: Thank you.
|
[196]
David J. Rowlands:
Neil, do you want to
make—?
|
[197]
Neil McEvoy: I just want to echo Janet’s view about the
Cabinet Secretary or Minister not taking time to meet you.
It’s not acceptable.
|
[198]
Janet Finch-Saunders:
Shocking.
|
[199]
Neil McEvoy: What I’d like to do is—I think this is an
issue that should go to a full debate in the Plenary. I
think I’d really like to do that.
|
[200] David J.
Rowlands: I think that will almost certainly happen with regard
to that response, which we think is completely unacceptable. Can I
say, to wind up, really, that it appears to us that this is very
much an intervention that could happen at the primary care stage?
You pointed out, Beth, to us that this sort of test costs absolute
peanuts. We’re not talking about high technology with regard
to this, and it seems to me that it really lies in the hands of
GPs. It seems incomprehensible to me that it isn’t
incorporated in the normal routine that they would go through with
a patient with regard to taking temperature or blood pressure. This
small, tiny little intervention that could happen at that stage
could be so critical in diagnosing this, as you know, Beth,
potentially devastating disease. So, I think we as a committee will
do all that we can to raise awareness of this situation,
particularly with regard to the Cabinet Secretary, making it an
absolute priority that doctors are very, very much aware of this
simple intervention, as I say, that can be taken forward.
|
[201] So, all we have
to do now is just ask if you have any other recommendations that
you would like to make to the committee at this point.
|
[202] Ms Moran:
No. I think we’ve covered everything, thank you, Chair.
|
[203] Ms
Baldwin: I would just like to say thank you to you, the
Petitions Committee, the previous committee, and all the AMs who
support us. This is not a party political issue. This is an
everybody issue. And to our amazing community. Thank you. Thanks
very much.
|
[204] David J.
Rowlands: Thank you. I’d like to say thank you very much
again, particularly you, Beth, for coming in front of us. There
will be a transcript available of this whole meeting that will be
made available to you, and if you want to come back to us on
anything that you see in that transcript that you’d like to
talk to us about, or there may be something that you feel should or
should not be in that transcript, you may come back to us and talk
to us about that. But, in the meantime, thank you very much; I can
assure you this will not be allowed to wither on the vine.
|
[205] Mike
Hedges: Also, Chair, if there’s anything you want to add
to the evidence that you gave this morning, you can put it in
writing and it will be added then into the information we’ve
got.
|
[206] David J.
Rowlands: Thank you for that, Mike. Thank you very much.
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