Public Petitions Committee

Meeting date: Tuesday, September 17, 2013

Official Report 610KB pdf

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New Petitions

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Single-room Hospitals (Isolation) (PE1482)

Item 2 is consideration of new petitions, of which there are three today. As previously agreed, the committee has invited the petitioners to speak to each of them. The first is PE1482, by John Womersley, on isolation in single-room hospitals. Members have a note by the clerk, the SPICe briefing and the petition.

I welcome to our meeting the petitioner—you are very welcome, sir; thank you for coming along—and the Rev Douglas Irving, who is the minister at Kirkcudbright parish church. Please feel free to intervene at any time during our questioning if there are any points that you wish to make.

I also welcome Alex Fergusson MSP, who has a constituency interest in the petition. My intention is to ask Mr Womersley to make a short presentation of around five minutes. After that, I will ask Alex Fergusson to make a brief statement. I will then ask a few questions, after which I will ask my colleagues to join in.

Thank you very much for inviting us here to present the case for allowing a mix of shared accommodation and single rooms in new-build Scottish hospitals. We have agreed with the clerk that we will split the five minutes into two two-and-a-half-minute speeches, if that is okay.

I would like to make it clear at the outset that we advocate a substantial increase in the number of single rooms, so that everyone who wants a single room can have one, but we feel that people who prefer to share accommodation in hospital should be given the choice to do so. When we talk about a mix of single rooms and mixed accommodation, we are not talking about going back to old-fashioned wards; rather, we are talking about friendly three or four-bedded bays with single rooms.

People who prefer to share do so for a number of good reasons. Some just like company and some fear isolation, but it is also the case that real problems can arise in single rooms. People feel that they might miss a meal, that they might not have access to enough water or that something might happen to them—even a cardiac arrest—that is not noticed. There have been well-publicised cases in which such things have happened. There was a case in London of a man called Kane Gorny in a single room who was so thirsty that he telephoned the police to get water. Unfortunately, when the police arrived, they were told that the patient was havering. Ultimately, Kane Gorny died. The husband of Labour MP Ann Clwyd was seriously mistreated in a single room in the University hospital of Wales in Cardiff. Members may have heard about the outcome of that a year or so ago.

We think that there are three main reasons for advocating a mix of rooms. First, there is no evidence base for requiring single rooms—not even for infection control. The general feeling is that a 50:50 mix of single rooms and shared accommodation would be fine for infection control. There is evidence that for people in rehabilitation or palliative care, shared accommodation has a healing influence.

In addition, there is public opinion. The Government sponsored a survey of 990 people across Scotland that sought their views on single rooms and what kind of accommodation they would like in hospital, and only 41 per cent expressed a strong preference for single rooms. The remainder said that they would prefer to share or that it would depend on the circumstances at the time. A survey that was conducted in the local hospital where I come from in Dumfries and Galloway came out with very similar results.

As well as the results of those surveys, there is evidence from the Dumfries and Galloway Advocacy Service, a general practitioner, a retired member of the health board and a distinguished physician in Dumfries and Galloway, who all advocate a mixture of accommodation.

Finally, there is the matter of cost. Compared with a 50:50 mix of single rooms and shared accommodation, the capital costs of providing single-room-only hospitals would probably be about 15 per cent greater, and the running costs and nursing costs would be a bit higher, too.

I speak from the perspective of having visited hospitals in my capacity as a parish minister and as a part-time hospital chaplain for over 30 years, so I think that I have a good grasp of people’s feelings about the issue. In addition, I have been a patient both in a single hospital room and in a small ward. I preferred the latter and for most people to whom I have spoken on the issue it is the preferred option, as it provides for a wholesome patient-care experience and allows patients to help each other when they are in need.

It is interesting that the spiritual care committee of Dumfries and Galloway health board, of which I am a member, said that it is not for hospitals to delegate patient-care responsibility to patients. However, I think that we are all our brothers’ keepers and that we all need to help each other in the wholesome experience that we can look for in hospital care.

My most serious concern is about denial of choice. Next year I will be able to vote on whether this country of ours should be independent—I will have a choice. In terms of worship in our church, we offer choice. Everywhere we look, we are offered choice. The chief executive of the health board where I live has conceded that when the new Dumfries infirmary has been built, I will not have any choice regarding hospital accommodation and will not be able to be admitted to a shared ward. That is a denial of choice.

It is very good that we have the opportunity this morning to share our concerns with the committee, because I question the extent to which MSPs have been able to exercise choice in consideration of this matter. I am not sure where the policy originated, but I suspect that it might have been in the personal family experience of the health minister’s predecessor. However, I do not know to what extent the opportunity for MSPs to express choice on the policy has unfolded on the floor of the chamber. I hope that this evidence session will result in fuller discussion of what is a very important matter that potentially affects all of us in Scotland. All of us around this table might one day be admitted to hospital.

I have personal experience of working with a family whose daughter was admitted to hospital for observation because she had hit her head following a night out. The mother phoned the hospital at 7 am and asked how her daughter was. “Oh, she’s fine,” she was told. However, 10 minutes later there was a phone call to her and she heard “I’m sorry—there’s been a serious deterioration in your daughter’s health.” The parents rushed to the hospital to find their daughter dead. I seriously question whether there had been proper observation of that young woman, who was in the isolation of a single room. That case raises the real issue of foreseeable risk in patient care.

I feel that the health boards, too, are being denied choice. They feel intimidated and constrained because they are told that they are not getting a new-build hospital unless they agree that it have single-room en suite patient accommodation. I asked my health board “Look, can you not make representations to the Scottish Government?” It told me that it had done so, but I want the advantage to patients of exercising a choice regarding their hospital accommodation to be pointed out. I would like the committee to take that point on board.

I was asked this morning by the Polish girl who served me breakfast what I am in Edinburgh for. I explained to her, and when she heard that this Government is committed to such a huge expansion of single-room en suite hospital accommodation, she said that Scotland must be a very wealthy nation.

Thank you for that. I invite Alex Fergusson to make a brief contribution.

10:30

I will make it as brief as I can, convener. I thank you for the opportunity.

As has already been intimated, this debate kicked off in my constituency with the announcement that a new hospital was going to be built and that it would consist entirely of single-bed accommodation, in accordance with the Scottish Government’s policy.

As any of you who are lucky enough to visit Dumfries and Galloway will probably realise quite quickly, it has quite an elderly population; indeed, its population is considerably older than the average in Scotland’s regions, partly because it is such a lovely place to retire to and to live in. We all read stories in the papers about elderly patients in hospitals who sometimes rely on other patients to feed and look after them and ring the bell if they are in trouble. I have no doubt at all that a person’s being in a small four-bed ward has a considerable beneficial impact on their recuperation from whatever they are in hospital for. Many of my constituents have told me that they feel that.

The announcement kicked off a very large amount of correspondence from very concerned patients to me, as the constituency member. That was backed up by concerns raised by Scotland Patients Association, which is chaired by a former colleague, Dr Jean Turner.

One of my real concerns—the issue has been highlighted to me—is the complete lack of consultation of patients preceding the policy, which seemed to come out of thin air. Dr Womersley referred to an in-house survey that was done by Chris Isles in Dumfries and Galloway royal infirmary, which had a quite interesting outcome. Around 60 per cent of people in wards said that they would like to stay in the wards if they were readmitted, but more interestingly, 40 per cent of the people in single rooms said that they would prefer to be in a multibed ward if they went back into hospital. That is significant and adds weight to the concern behind the petition.

I am aware of the time, so I will finish. We all sometimes get a little bit critical of consultations that seem to have a predetermined outcome. In this case, we have gone one step worse, in that we have, it seems to me, a predetermined outcome without any consultation.

Thank you for your time.

Thank you, Mr Fergusson.

You have covered the question that I was going to ask, which was about patients’ views, so I will ask our two witnesses about one of the other arguments that has been touched on, which relates to infection control. There is an argument about single rooms being better for resisting hospital-acquired infections. I would be grateful for your views on whether that is a valid point in favour of or against single rooms in hospitals.

One of my members was in single-room accommodation. She had a terminal cancer, but I am glad to say that it has been treated and she is now in remission. She contracted an infection in that situation. Evidence has pointed to an overall reduction in infection through better infection control. There needs to be investment in staff training to make them aware of the need to wash hands in between dealing with patients.

A note that was written by Chris Isles, who is professor of medicine at Dumfries and Galloway royal infirmary, said that the only evidence for single rooms reducing hospital-acquired infection seems to be a Canadian study that suggests that having all provision in single rooms prevents one case of infection per 1,818 admissions to hospital. That assumes that isolation in a single room rather than good hand washing or some other infection control mechanism makes a difference. The medical experts seem to be fairly convinced that the 100 per cent argument does not wash, so to speak.

No pun intended.

If some of the budget allocation that is going into the extravagant move towards single-room en suite accommodation could be put into further resourcing staff training and increasing staff numbers, that would be a very helpful way forward.

Good morning, gentlemen. I wonder whether you could help me. In February 2007, an interim statement was issued to the health boards that was based on the recommendations of the European health property network report. It said:

“it is appropriate to provide an overall single occupancy room level of between 50% and 100%.”

By November 2008, the chief nursing officer issued a chief executive’s letter saying that

“there should be a presumption that all patients will be accommodated in single rooms”.

Do you have any indication as to why that statement was made a year and a half later? Why did we go from a recommended single occupancy room level of “between 50% and 100%” to an occupancy level of 100 per cent? In fact, the chief medical officer’s clinical specialties advisers said:

“the current provision of single room accommodation is not sufficient across NHS Scotland and 100% single room provision is clinically appropriate in most clinical settings.”

I am confused. Can you help me?

The response that Alex Fergusson and I got from Nicola Sturgeon at that time was that the Scottish Government had undertaken considerable work on provision of single-room accommodation and had set up a steering group that reported on the available literature and evidence for single rooms, a public attitude survey, a nurse staffing report and a financial impact study. The group concluded that for all new-build hospitals or other healthcare facilities with inpatient accommodation, there should be a presumption that all rooms will be single.

I have looked at a lot of that evidence that says that patients consistently voice a preference for single rooms: 41 per cent of patients consistently voice a preference for single rooms, but many other people voice a preference for shared accommodation, so I think that the evidence has been interpreted in a certain way. The public attitude survey certainly has a convincing histogram showing the people who would definitely prefer to have a single room and, further down, the people who inconsistently prefer one or who prefer to share.

Did anyone ever ask the question, to your knowledge, about how much the hospital would cost if we had had 50 per cent single rooms, as opposed to 100 per cent single rooms?

Board member Professor Hannay, who was a professor of general practice before he retired and who has investigated this stuff, said that the extra cost will be 15 per cent in capital costs and that there will be roughly the same increase in running costs and nursing costs. When I asked the board that question about cost, it said that it could not answer it because there was no option but to have 100 per cent single rooms, so it had not investigated the difference. However, that board member certainly came up with that figure.

So, are you saying that it cost—

It would cost about 15 per cent more to have all single rooms than it would to have a mix of singles and four-bedded bays.

I have no more questions.

You began—I want to start where you began—by giving examples of patients who suffered as a result of being in single rooms. The unfortunate impression might have been created that only patients in single rooms have had unfortunate experiences in hospitals across Scotland and the wider United Kingdom.

Do you accept that whether it be in a room or a ward or a single room, we have all heard of patients who suffered because the standard of treatment or care that they received was not as it should have been?

Personally, I am not aware of any example where the fact that the patient was in a single room was cited specifically as the reason why they suffered.

I would go along with that; I accept that that is the case.

Thank you, because it is an important point. All private and independent hospitals have single rooms.

That is correct.

What is their record on health-acquired infections compared with the sector that has a variable mix?

I cannot answer that.

I think that their record is better.

Why should people who are being treated within the national health service receive a lesser standard of care or treatment than those who are treated in the private or independent sector? For patients who have been treated in the independent sector, when has there been any evidence that they have felt that being in a single room has in some way led to their receiving inferior care?

There are two questions there. First, if I was in hospital for very short, simple treatment, I would much prefer to be in shared accommodation and I certainly would not feel that I was getting substandard treatment because I was in shared accommodation. In fact, when I was a junior doctor at Ruchill hospital and some patients were in single rooms, the nurses felt sorry for them because they were missing out on the camaraderie of the ward and the general healing spirit.

Forgive me for thinking that people are in hospital largely to be treated clinically in the first instance. I am interested in the concept of choice. If schoolchildren were to say that they would like to be taught in individual classrooms rather than in a collective classroom, what credence would we give to that? The matter that you raise was debated in this Parliament and all the political parties supported the move to single rooms—a policy that was announced by the Cabinet Secretary for Health and Wellbeing at the time. On what basis should we set aside what is thought to be the appropriate clinical direction for treatment in hospital because people would like there to be a social environment?

I do not know that it would lead to that. There are doctors in Dumfries and Galloway, including the eminent clinician Professor Isles, who favour mixed rooms. The medical input is one thing, but there is more to the healing environment than just the medical side.

Do you have examples—as I do—of people being put into a room with three or four beds along with other patients whom they thought unsuitable people to be in a room with?

Absolutely. We would be in favour of having enough single rooms to accommodate not just those who want single rooms, but those whose medical condition, behaviour or other attributes require them to be in a single room.

How could that be done?

By moving them.

How could they be moved if there were no single rooms left, only rooms with multiple beds?

It would be about trying to balance things, as in a maternity labour room. One time in three years, perhaps, there might be insufficient beds in the labour room to accommodate all the people who are going into labour. There would have to be a balance with, say, 50 or 60 per cent single rooms so that, 99 times out of 100, or 990 times out of 1,000, people could be provided with the accommodation that they required.

My problem with your proposal is all the unintended consequences that it could have. My most recent experience of hospital was of being in a room with six beds. We had in the ward a convict from prison who was chained to the bed and permanently secured by prison guards. During his time in the ward, there was an incident in which, despite the length of the chain, he attacked police officers. I thought that that was a completely inappropriate environment for other patients to be in. If he had expressed the wish to be in a shared room rather than a single room, should his wish have been respected?

Of course not.

Who would you include in a list of those who could decide whether they wanted to be in a single room or a mixed room? How would you define who is entitled to make that choice? Would it be a clinical decision or a decision of the patient? If the doctor felt that a patient should be in a single room but the patient expressed the view that they wanted to be in a room with a number of beds, whose will would prevail?

Usually, the two would be in accord.

What if they were not?

If they were not in accord, the doctor’s view would prevail.

Exactly, and the clinical view at the moment is that we should move to single room accommodation.

That is not the clinical view. There are umpteen bits of evidence against that. Professor Isles and Professor Hannay are distinguished clinicians who have researched all the evidence.

I have not seen any of the surveys that were undertaken, but it is difficult to rely on them because the questions that are put to individuals can be subjective.

I carried out a 38 Degrees petition to which there were 200 signatories, 40 of whom wrote substantial evidence backing up their preference to share accommodation.

That appears to be based on social reasons.

It is based on healing reasons. There are also people at the end of their lives who do not want to die in a single room.

We are a little short of time. If you do not mind, Mr Carlaw, we will move on.

Good morning, Mr Womersley and Mr Irving. Mr Womersley, you acknowledged in your earlier statement that more than 40 per cent of patients would prefer single rooms, as evidenced by the public attitudes survey that the steering group conducted in 2008. However, you did not mention the other figures. The survey found that only 22 per cent would prefer a multibedded room and that 27 per cent would not mind.

That is what the survey showed. Yes.

A study that was conducted by the Health Environments Research & Design Journal concluded that single-bedded rooms

“are the design intervention that positively affects the largest number of outcomes in a hospital setting”,

especially in terms of healthcare-acquired infections, improved patient sleep, privacy, patient satisfaction and communication with family members. Is that not why more than 40 per cent of patients want to be in a single-bedded room?

10:45

I certainly support their having that view. Anyone who wants to be in a single room will have valid reasons for feeling that way. However, I would not feel the same way if I was admitted to hospital for more than a couple of days.

The petition is not against single rooms; instead, it simply says that we ought to consider giving people a choice, although not to the extent that Jackson Carlaw mentioned, whereby every patient gets exactly what they want. That is not the case at the moment; at the moment, patients go into single rooms even though they might not want to. I was in a single room and I thought that it was absolutely splendid, but I like my own company. A lot of people do not, which is probably why they did not want to put me in a multibedded ward, but that is by the by.

The system is not perfect. It would not be perfect if there was a choice, but the fact is that there would be a choice that does not exist at the moment. As for Jackson Carlaw’s clever insinuation that the petition suggests that there is somehow a poorer level of clinical care in a national health service hospital as opposed to a private hospital and in a multibedded room as opposed to a single-bedded room, I have to say that the petition contains no such suggestion. Clearly, Jackson and I will discuss the issue further in the privacy of our own corridor.

I will not intrude on family grief.

Do members have any other questions?

With regard to Jackson Carlaw’s point about socialisation, do you, Dr Womersley, with your medical experience, believe that in many cases socialisation can help people who are receiving medical attention along the route to health?

Absolutely.

Our next step is to decide how to deal with the petition. It seems sensible to ask the Scottish Government for specific information about choice. Some have argued that, as the Scottish Government has already made its views clear, we should not have to look at the issue, but the petition raises interesting points about the role of choice and I think that it is worth exploring with the Government the extent to which patients are given a choice between a multibedded ward and a single-bedded room. I would welcome the committee’s views on that suggestion.

I support that course of action. This is an opportunity for the Scottish Government, some years after the Parliament’s debate on the issues, to set out in writing its arguments in favour of the policy, which I note the Parliament supported.

I do not know whether this is within our remit, but I would like to find out the basis for suggesting that the move to single-bedded rooms in hospitals will cost 15 per cent more.

That is a reasonable question. It is perfectly within our competence to raise such points with the Government. If it has those figures, which it might well have, we will get the information back.

Another reason for asking the question is the surveys, which have in some cases been disavowed, on the suggestion that there be 50 to 100 per cent single-bedded rooms.

We will ensure that Chic Brodie’s point is covered in our letter to the Scottish Government. Are members happy with that course of action?

Members indicated agreement.

I thank both witnesses for attending the meeting and raising the issues in the petition. You answered our questions extremely well and I appreciate your giving up your time to come along this morning. I also thank the local MSP, Alex Fergusson, for giving up his time to come along and make a number of comments.

I suspend the meeting for a minute for a changeover of witnesses.

10:49 Meeting suspended.

10:50 On resuming—

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Independence Referendum (Bilingual Question) (PE1483)

Our second new petition is PE1483, by John Macleod, on a bilingual version of the independence referendum question. Members have a note from the clerk—I refer members to paper 4—as well as the SPICe briefing and the petition.

I welcome the petitioner, John Macleod, who is accompanied by Professor Rob Dunbar from the University of Edinburgh. Gentlemen, you are both very welcome and I thank you for coming along today. As members will be aware, Mr Macleod and Professor Dunbar will give their evidence in Gaelic, for which simultaneous translation facilities have been provided. Members should wear the headphones provided to listen to the translation.

I invite Mr Macleod to make a short presentation of around five minutes to set the context. We will then move to questions from myself and my colleagues.

A chathraiche agus a bhuill na comataidh, tapadh leibh airson an cothrom seo a thoirt dhuinn fianais bheòil a thoirt seachad don chomataidh. Is mise Iain Macleòid agus còmhla rium tha an t-Àrd Ollamh Rob Dunbar, cathraiche cànanan, litreachas, eachdraidh is àrsaidheachd Cheilteach aig Oilthigh Dhùn Èideann.

Tha an athchuinge ag iarraidh air a’ chomataidh ìmpidh a chur air Riaghaltas na h-Alba dreachd dà-chànanach a sholarachadh de phàipear-baileit reifreinn neo-eisimealachd na h-Alba. Ged a chaidh an e-athchuinge a-steach nam ainm fhìn a-mhàin, fhuair e taic fhad ’s a bha e air loidhne airson ùine ghoirid bho 733 neach a chuir an ainmean ris.

Am measg nam prìomh phuingean air am bu mhath leam gum beachdaich sibh an-diugh, is iad na prìomh phrionnsapalan a th’ ann, an toiseach, còraichean cànain luchd-labhairt na Gàidhlig, agus a-rithist, a bhith a’ buileachadh laghan agus phlanaichean cànain gnàthaichte a thaobh co-ionannachd spèis. Chan eil seo idir mu dheidhinn luchd-labhairt na Gàidhlig a’ tuigsinn na Beurla no gur e pàipear-baileit aon-chànanach an cleachdadh àbhaisteach ann an taghaidhean no reifreannan air feadh na Rìoghachd Aonaichte.

Chaidh Achd na Gàidhlig (Alba) 2005, don deach taic uile-phàrtaidh a thoirt ann am Pàrlamaid na h-Alba, aontachadh

“le sùil ri bhith a’ cur inbhe na Gàidhlig air stèidh thèarainte mar chànan oifigeil an Alba aig am bi spèis ionann ris a’ Bheurla”.

Tha gach cuid Riaghaltas na h-Alba agus Pàrlamaid na h-Alba air planaichean Gàidhlig fhoillseachadh a tha ag amas air dèanamh cinnteach, nuair a thèid seirbheisean a lìbhrigeadh anns a’ Ghàidhlig, gum bi iad aig inbhe is càileachd a bhios ann am coimeas ri seirbheisean sa Bheurla. Tha iad cuideachd a’ gealltainn inbhe na Gàidhlig àrdachadh le bhith a’

“dèanamh cinnteach gum bi ìomhaigh nas motha air a thoirt don Ghàidhlig taobh a-staigh beatha phoblaich na h-Alba”.

A bharrachd air sin, chuir gach cuid Riaghaltas na RA agus Riaghaltas na h-Alba an ainmean ris a’ Chùmhnant Eòrpaich airson Cànanan Roinneil no Mion-chànanan, agus bu chòir suim a ghabhail de na geallaidhean sin.

Na mo bheachd-sa, tha cleachdadh na Gàidhlig ann am prìomh phròiseas bhun-reachd leithid reifreann air neo-eisimeileachd—ceist a thuirt Riaghaltas na h-Alba fhèin a tha nas cudromaich na gin eile a chaidh a chur fa chomhair luchd-bhòtaidh na h-Alba ann an còrr is 300 bliadhna—deatamach gus a bhith a’ comharrachadh iomchaidheachd a’ chànain mar

“chànan oifigeil na h-Alba”.

Tha sinn an dùil gum bi deugairean 16 is 17 am measg luchd-bhòtaidh an reifreinn, agus bidh cuid dhiubh air gluasad bho shiostam air leth soirbheachail foghlam tro mheadhan na Gàidhlig, a tha air a bhith againn o chionn 25 bliadhna. Tha iad làn-airidh gun toirear aithne agus spèis don chànan oideachaidh aca, mar a chaidh a dhearbhadh ann an achd 2005.

Ged a tha mi a’ cur fàilte air gealladh an Riaghaltais mu bhith a’ cur a-mach stiùireadh mu phròiseas an reifreinn ann an dreachd dà-chànanach, chan eil ann am pàipear-baileit dà-chànanach ach ceum beag nas fhaide na sin. Chan eil ach aon cheist ghoirid air a’ phàipear—dìreach sia faclan. Dh’fhaodadh gur e ceum beag a bhiodh ann am pàipear-baileit sa Ghàidhlig, ach ’s e ceum sònraichte a bhiodh ann, agus ma tha pàipearan-baileit dà-chànanach ceadaichte anns a’ Chuimrigh, carson nach biodh ann an Alba?

Mu dheireadh, dh’iarrainn oirbh smaoineachadh air dè an teachdaireachd a bhiodh diùltadh pàipear-baileit sìmplidh dà-chànanach a’ cur a-mach gu coimhearsnachd na Gàidhlig, agus dè bhiodh seo a’ ciallachadh mu shealladh Pàrlamaid na h-Alba air an aon mhion-chànan a tha a’ faighinn aithne mar chànan oifigeil ann an Alba.

Following is the simultaneous interpretation:

Convener and committee members, thank you for giving us this opportunity to give oral evidence to the committee. My name is John Macleod and, as you said, this is Professor Rob Dunbar, who is the chair of Celtic languages, literature, history and antiquities at the University of Edinburgh.

The petition calls for the committee to urge the Scottish Government to provide a bilingual version of the Scottish independence referendum ballot paper. Although I submitted the e-petition in my name only, during the brief period for which it was online, it was also supported by 733 signatories.

The main points that I would like you to consider are the following. The relevant issues are, first, the language rights of Gaelic speakers and, secondly, the application of existing law and language plans in relation to equality of respect. The issue is not about the fact that Gaelic speakers can understand English, nor is a monolingual ballot paper the normal practice in elections or referenda across the United Kingdom.

The Gaelic Language (Scotland) Act 2005, which received all-party support in the Scottish Parliament, was passed

“with a view to securing the status of the Gaelic language as an official language of Scotland commanding equal respect to the English language”.

Both the Scottish Government and the Scottish Parliament have published Gaelic language plans with the aim of ensuring that, when services are delivered in Gaelic, they are of a comparable standard and quality to those that are provided in English. There is also a commitment to enhance the status of Gaelic by

“ensuring that Gaelic is given an increased profile within Scottish public life”.

Furthermore, both the UK and Scottish Governments are signatories to the European Charter for Regional or Minority Languages, and those commitments should be respected.

The use of Gaelic in a key constitutional process such as a referendum on independence—a question that the Scottish Government has said is the most important question to be put to a Scottish electorate in more than 300 years—is necessary in order to demonstrate the relevance of the language as

“an official language of Scotland”.

We expect that the referendum electorate will include 16 and 17-year-olds, some of whom will be products of the successful Gaelic-medium education system over the past 25 years. They deserve to have their education language given the due recognition and respect that the 2005 act said that it should have.

I welcome the Government’s promise to issue guidance on the referendum process in a bilingual format, but a bilingual ballot paper is only a small step beyond that stage. The ballot paper will have one short question of just six words. A bilingual ballot paper may be a small step for Gaelic, but it would be a significant one. If bilingual ballot papers can be used in Wales, why not in Scotland?

Finally, I ask you to consider what message the denial of a simple bilingual ballot paper would send to the Gaelic-speaking community. What would that signify regarding the Scottish Parliament’s approach to Scotland’s only official minority language?

Thank you for that opening statement. I will kick off with the first question. Professor Dunbar, if you wish to respond at any time, please indicate and we will be very happy to hear your views.

Are you concerned that Gaelic is not being given the respect that is due given its statutory status as an official language of Scotland?

Gu cinnteach. Ma dh’aontaich a’ Phàrlamaid inbhe cànan oifigeil a thoirt don Ghàidhlig, is cinnteach gun do bheachdaicheadh aig an àm air dè a’ bhuaidh a bheireadh seo air a’ chànan. Is cinnteach gu bheil leithid taghaidhean agus reifreannan a’ tighinn a-steach dha na cothroman sin a bu chòir dhan Ghàidhlig fhaighinn aig ìre oifigeil poblach.

Following is the simultaneous interpretation:

Certainly. When the Parliament agreed to give official language status to Gaelic, surely it thought about the effect that that would have on the language. Surely things such as elections and referendums come into the opportunities that Gaelic should have at the official, public level.

Thank you for that. I will now bring in my colleagues.

I should declare my convenership of the cross-party group on Gaelic and that John Macleod has been an acquaintance of mine for a number of years and there has been correspondence between us regarding the petition. Perhaps I should also declare that we are both Leòdhasaich, which is the Gaelic term for people from Lewis.

Madainn mhath, Iain. Madainn mhath, Professor. It is good to hear Gaelic being spoken in committee proceedings in Parliament once again. You will be aware that the Referendum (Scotland) Bill Committee’s stage 1 report, which the Parliament debated last week, concluded:

“We don’t consider that a persuasive case has been made for a bilingual ballot paper. One of the great virtues of the ballot paper set out in the Bill is that it is simple and clear. As witnesses have pointed out, a Gaelic translation will be available to those who wish to refer to it.”

What do you say to those who argue that a bilingual ballot paper could cause confusion?

Chanainn an toiseach nach bu chòir an t-uallach a bhith oirnn a bhith a’ putadh airson inbhe a thoirt dhan Ghàidhlig mar seo. Is cinnteach ma chaidh inbhe oifigeil a thoirt dhan chànan, ma tha planaichean Gàidhlig air ullachadh a dhèanamh airson a’ chànain, gum bu chòir sin a bhith gu leòr. Carson a dh’fheumadh sinn a bhith a’ dèanamh barrachd iomairt airson ar cànan na dh’fheumadh luchd-labhairt na Beurla? Mar sin, chan eil mi a’ smaoineachadh gu bheil e ceart gum bu chòir dhuinn barrachd iarraidh air coimhearsnachd na Gàidhlig na bhiodh air iarraidh air coimhearsnachd na Beurla.

Chan eil mi a’ smaoineachadh leis an t-seòrsa pàipeir seo gun cuireadh e duine sam bith troimh chèile no gun adhbhrachadh e mì-chinnt no imcheist ann an inntinnean luchd-bhòtaidh. Tha am pàipear gu math sìmplidh—chan eil ann ach aon cheist le sia faclan. Chan e pàipear fada le tòrr sgrìobhaidh no càil dhen t-seòrsa sin a tha ann.

Tha a’ cheist gu math sìmplidh agus dh’fhaodadh, mar a tha daoine a’ dèanamh anns a’ Chuimrigh, leth dhen phàipear a bhith ann am Beurla agus leth eile a bhith anns a’ Ghàidhlig. Dh’fhaodadh dà bhogsa a bhith ann airson roghainn a dhèanamh. Chan eilear ag iarraidh air duine dad a sgrìobhadh ach X a chur dhan bhogsa. Tha mi a’ smaoineachadh gur e seo eisimpleir dhen t-seòrsa paipear-bhòtaidh far am bu chòir dhuinn tòiseachadh a’ toirt co-ionannachd cothruim agus co-ionannachd spèis dhan Ghàidhlig. Mas e pàipear gu math sìmplidh a th’ ann, cha bu chòir dha dragh sam bith a dhèanamh ann an inntinn luchd-bhòtaidh.

Following is the simultaneous interpretation:

First, the pressure should not be on us to press for status for the language. Official status was given to the language and Gaelic language plans have been prepared, so why should we have to push for improvements to the status of the language? I do not think that it is correct that we should ask for more from the Gaelic language community than we would from the English language community.

I do not think that the paper would confuse anyone or cause confusion in voters’ minds. It is a simple paper. There is one question with only six words. It is not a long paper with lots of writing or anything like that.

The question is simple. As happens in Wales, half the paper could be in English and half could be in the other language. There could be just two boxes for the choice. We do not ask anyone to write anything on the ballot paper apart from putting X in one box. This is an example of the type of voting paper where we should start giving equality to Gaelic. It will be a simple paper and it should not cause any problems for the voters.

11:00

Tapabh leibh airson a’ chothruim an-diugh fianais a thoirt seachad tro mheadhan na Gàidhlig. Tha sin cudromach don Ghàidhlig, agus tha sinn fada nur comain.

A thaobh co-dhiù a bhiodh daoine troimh chèile, thathas agus bhathas a’ cleachdadh bileagan-bhòtaidh dà-chànanach anns a’ Chuimrigh, ann an diofar reifreannan thar nam bliadhnachan. Ann an Èirinn cuideachd, thathar a’ cleachdadh phàipearan-bhòtaidh dà-chànanach ann an reifreannan. Is ann à Canada a tha mise agus ann an cuid a sgìrean, leithid Quebec, tha daoine cleachdte ri bhith a’ làimhseachadh seo.

Ged a tha barrachd luchd-labhairt na Cuimris agus barrachd luchd-labhairt na Gaeilge ann na tha de luchd-labhairt na Gaidhlig ann an Alba, tha cuid ann an Èirinn, sa Chuimrigh agus ann an Quebec a tha làn chomasach anns an dà chànan. Tha cuid a tha comasach air aon chànan a bhruidhinn gun a bhith ga leughadh agus mar sin air adhart, agus tha na dùthchannan sin gu math coltach ris an t-suidheachadh againne ann an Alba a thaobh chomasan.

Chan eil fianais sam bith bho na dùthchannan sin gu bheil daoine troimh chèile le pàipearan-bhòtaidh mas e is gu bheil a’ cheist sìmplidh anns an dà chànan. Tha deagh eisimpleirean bho na dùthchannan sin mu choltas nam pàipearan-bhòtaidh. Cha chreid mi gum biodh adhbhar sam bith a bhith draghail no gum biodh seo ag adhbharachadh thrioblaidean. Cuideachd, dh’fhaodadh Coimisean an Taghaidh sùil a thoirt air a’ cheist, mas e ceist dhoirbh a tha seo ann am beachd na Pàrlamaid.

Following is the simultaneous interpretation:

Thank you very much, and thank you for the opportunity to be here today to give evidence in Gaelic. That in itself is an important thing for Gaelic and we are very grateful for the opportunity.

Regarding whether people would be confused, as John Macleod said, bilingual voting papers have been used in Wales in different referenda over the years. Also, Ireland uses bilingual voting papers in referenda. I am originally from Canada, and again in provinces such as Quebec, people are used to using bilingual voting papers.

Although there are more Welsh speakers in Wales and Irish speakers in Ireland than there are Gaelic speakers in Scotland, some people in Ireland, Wales and Quebec are more than able to speak their two languages. Some are able to speak one language but may not be able to read in the other language. In many ways, the situation in those countries is similar to the one in Scotland.

There is no evidence from those countries that people are confused by having a bilingual voting paper, especially if the question is simple. There is evidence from those countries about what ballot papers look like and I do not think that there would be any problem at all. Also, the Electoral Commission could take a look at the issue, especially if the Parliament thought that there might be any difficulty.

You both mentioned the fact that the ballot paper for the Welsh referendum on extending the powers of the Welsh Assembly was bilingual. Presumably, you brought that to the attention of the Scottish Government and the Referendum (Scotland) Bill Committee in your submissions. Also, I believe that Arthur Cormack, who submitted comments to the Referendum (Scotland) Bill Committee, provided a sample of what the ballot paper could look like.

I note that, in your submission to the Public Petitions Committee, you state:

“The opportunity will also be taken to bring the absence of a bilingual ballot paper in the referendum to the attention of the Council of Europe Committee of Experts who, at a meeting on 1st May 2013, will be taking evidence from Gaelic organisations as to the Scottish Government’s progress on meeting their obligations under the European Charter for Regional or Minority Languages.”

How did that meeting go? Did you highlight the lack of a bilingual ballot paper?

Gu mì-fhortanach, cha d’ fhuair mise an cothrom fianais a thoirt seachad dhan choinneamh a bha sin agus cha b’ urrainn dhomh a ràdh an deach an cuspair a dheasbad no nach deach. Cha robh Rob an làthair a bharrachd, agus mar sin chan urrainn dhomh sin a fhreagairt.

Following is the simultaneous interpretation:

Unfortunately, I did not have the opportunity to give evidence at that meeting, so I cannot say whether the issue was discussed. Rob Dunbar was not there either, so we cannot answer that question.

Perhaps you could get back to us with some more information on that.

Convener, with your indulgence, I will ask another question. As I mentioned, the stage 1 debate on the Scottish Independence Referendum Bill took place last week. During the debate, it was pointed out that no Gaelic speaker is monolingual. However, it was also acknowledged that, whether or not we have independence, this Parliament needs to address equal respect for Gaelic, as set out in the 2005 act. It was also pointed out during the debate that no attempt was made by petitioners to have bilingual ballot papers in the 2007 and 2011 Scottish Government elections, the 2010 UK election or the alternative vote referendum. Was any consideration given to petitioning for a bilingual ballot paper at any of those elections?

Cho fad ’s as aithne dhomh, cha deach leithid a dh’oidhirp a dhèanamh gu ruige seo, agus tha mi a’ smaoineachadh gum biodh e ceart a ràdh gun robhas a’ faicinn duilgheadas aig an àm le cus fiosrachaidh a bhith air pàipearan-bhòtaidh. Tha cuimhn’ agam aig aon dhe na cothroman bhòtaidh gun robh gearan mòr air cho fada ’s a bha am pàipear-baileit agus gun robh sin ag adhbharachadh duilgheadas dhan luchd-bhòtaidh. Ach, uair a thug mise sùil air seo, chunnaic mi gur e cothrom a bh’ ann an iomairt seo a chur air chois leis gur e pàipear-bhòtaidh gu math sìmplidh agus goirid a tha gu bhith ann an ath-bhliadhna. Mar sin chan fhaca mi gun robh eisimpleir nas fheàrr againn gu ruige seo airson co-ionannachd na Gàidhlig fhaighinn a-steach dhan t-siostam bhòtaidh.

Following is the simultaneous interpretation:

As far as I know, no such effort was made. I think that it would be correct to say that, at the time, having too much information on the voting papers was seen as being a problem. I remember that at one of the elections there was a complaint about how long the ballot paper was and that that would cause problems for voters. I saw this ballot as an opportunity to start up this initiative, as the voting paper that will be used next year will be very simple and short. I have never seen an opportunity up till now where we could have equality for Gaelic in the voting system.

The bill’s progress has not been completed, as it still has to go through stages 2 and 3, so there may be an opportunity for members to lodge amendments at stage 2. I am sure that you will watch proceedings with interest.

Bha mi dìreach a’ dol a ràdh gu bheil referenda rud beag eadar-dhealaichte bho thaghaidhean eile. Anns gach sgìre-bhòtaidh tha na pàipearan eadar-dhealaichte agus is cinnteach gum b’ fheuch e do Bhòrd na Gàidhlig agus buidhnean eile beachdachadh air cleachdadh na Gàidhlig air foirmean oifigeil ann an taghaidhean—is e rud cudromach a bhiodh ann—gus ìomhaigh agus cleachdadh na Gàidhlig a bhrosnachadh. Tha sin aig teis-meadhan feallsanachd Achd na Gàidhlig, a’ Ghàidhlig a bhrosnachadh ann an suidheachaidhean eadar-dhealaichte bho na suidheachaidhean àbhaisteach a bha luchd na Gàidhlig a’ cleachdadh a’ chànain. Le sin, tha mi a’ smaointinn gur e ceist chudromach a tha sin.

Gu ruige seo, cha deach deasbad a dhèanamh air sin agus tha mi cinnteach gum biodh diofar bheachdan air co-dhiù a bu chòir pàipearan-bhòtaidh dà-chànanach a chleachdadh chun na h-aon ìre anns na h-Eileanan an Iar agus can ann an Sealtainn. Tha ceistean doirbh agus trioblaideach an lùib sin ach tha an taghadh seo eadar-dhealaichte anns an t-seadh sin. Thèid aon phàipear-bhòtaidh a chleachadh air feadh na dùthcha, agus anns an t-seadh sin tha an taghadh seo eadar-dhealaichte.

Thathas ag aithneachadh sin ann an Èirinn mar eisimpleir, ged a tha iad a’ cleachdadh phàipearan-bhòtaidh dà-chànanach ann an cuid a thaghaidhean tha achd sònraichte a chaidh aontachadh le Pàrlamaid na h-Èireann mu referenda. Tha e acasan anns an lagh gum bu chòir pàipearan-bhòtaidh dà-chànanach a bhith ann. Mar sin, tha a’ cheist cudromach agus bhrosnaichinn fhìn a’ Phàrlamaid seo, Bòrd na Gàidhlig agus buidhnean eile gus sùil gheur a thoirt air a’ cheist seo ach ’s e taghadh cuimseach eadar-dhealaichte a tha anns an taghadh seo seach taghaidhean eile.

Following is the simultaneous interpretation:

I was just going to say that referenda are slightly different from normal elections, in which the voting papers are different in every constituency. I think that it would be worth Bòrd na Gàidhlig thinking about the use of Gaelic in official forms at election time. That is important in raising the profile and image of Gaelic. At the very heart of the philosophy of the Gaelic Language (Scotland) Act 2005 is the promotion of Gaelic in situations that are different from the normal situations in which Gaelic speakers use the language. I therefore think that this is a very important part of that.

Up till now, there has been no discussion of the issue, and I think that there will be different views on whether bilingual voting papers should be used in the Western Isles, for example. There are problems associated with that, but this is a different situation: there is just one voting paper for the whole country. In that respect, this vote is different.

Such situations are recognised in Ireland, for example. Bilingual voting papers are used in some elections, and the Irish Parliament agreed to a special act regarding referenda. That statute says that referenda should have bilingual voting papers. In that sense, I would encourage the Scottish Parliament, Bòrd na Gàidhlig and other groups to look very closely at our proposal. The independence referendum is very different from other, normal elections.

I am sure that Bòrd na Gàidhlig will take on board the facts that have been raised in today’s debate. I have a meeting with the chief executive of Bòrd na Gàidhlig tomorrow, and I will certainly take that opportunity to raise the points that you have raised today.

Thank you for that. We are a little bit short of time, so I ask members to indicate if they wish to ask questions.

Madainn mhath. Professor Dunbar, you indicated that the importance of the independence referendum means that you would like to see both Gaelic and English being used in all ballot papers. Do you wish to see that extended to other elections in future? The referendum could be a precedent for other elections. If you are serious about promoting the Gaelic language, one way of doing that would be to promote it every four or five years at an election rather than just in the referendum.

Gu dearbh, tha mi a’ smaointinn gur e fìor dheagh chothrom a tha ann sin a phiobrachadh, agus is cinnteach gum bi daoine a’ deasbad na ceist seo tro mheadhan na Gàidhlig. Tha gach taobh anns an iomairt bhòtaidh mu thràth air goireasan a chur air dòigh gus Gàidhlig a chleachdadh; tha daoine anns na meadhanan, air blogs agus eile, a’ deasbad na ceist seo tro mheadhan na Gàidhlig. Bidh na meadhanan Gàidhlig a’ leantainn an reifreinn gu dlùth agus is cinnteach gum bi daoine a’ deasbad ceist neo-eismeileachd na h-Alba tro mheadhan na Gàidhlig.

Is e rud math a tha sin agus tha e iongantach ann an dòigh gu bheil an Riaghaltas fhèin air pàipearan conaltraidh a sgaoileadh tro mheadhan na Gàidhlig. Bhitheamaid an dùil gun do sgaoil iad na pàipearan sin gus cleachdadh na Gàidhlig a bhrosnachadh anns a’ cheist chudromach seo. Mar sin, faodaidh sinn deasbad, faodaidh sinn a’ cheist a sgrùdadh agus faodaidh sinn fiosrachadh fhaighinn bho na meadhanan agus a h-uile rud a dhèanamh tro mheadhan na Gàidhlig, ach nuair a thèid sinn dhan chùbaid gus an taghadh againn a chomharrachadh, chan fhaod sinn a leughadh tro mheadhan a’ chànain. Tha sin car annasach. Bho seo a-mach, tha mi a’ smaointinn gu bheil e cudromach gum bi sinn a’ beachdachadh air cleachdadh na Gàidhlig ann an ceistean cudromach leithid taghaidhean aig ìre nàiseanta agus ionadail cuideachd.

Following is the simultaneous interpretation:

Indeed. This is a good opportunity to press the point. I am sure that people will discuss that question through the medium of Gaelic. Both sides in the referendum campaign have created resources in the Gaelic language; in the media and in blogs people are discussing, through the medium of Gaelic, whether Scotland should be an independent country. The Gaelic media discuss the issue very closely, and certainly people will discuss the question through the medium of Gaelic. That is a great thing. It is very good that people are able to do that.

In a way, it is strange that the Government has issued consultation papers in Gaelic about the issue—we can discuss and analyse the issue and get information in Gaelic, but when we go to vote and tick the box that we want to tick, we will not be able to do that through the medium of Gaelic. I find that a little bit strange. I also think that, from now on, we should look at the use of the language in important aspects of life, such as general elections.

Chanainn gur e cothrom a tha seo deuchainn fheuchainn leis a’ cheist seo mar phìleat. Bidh e math ma dh’obraicheas e; ma nochdas duilgheadas sam bith, ionnsaichidh sinn dè bu chòir a dhèanamh anns an àm ri teachd.

Dh’fhaodadh gun robh ceistean dhen t-seòrsa seo air an togail nuair a thòisich sinn air foghlam tro mheadhan na Gàidhlig. Bha duilgheadasan agus teagamhan gan nochdadh an robh e iomchaidh agus am bu chòir clann a bhith air an oideachadh anns a’ Ghàidhlig an àite anns a’ Bheurla. Tha sinn air faighinn seachad air sin. Tha 25 bliadhna bho thòisich foghlam tro mheadhan na Gàidhlig agus ’s e siostam air leth soirbheachail a tha ann. Chan eil duine ag ràdh nach eil e iomchaidh dha clann a bhith a’ faighinn an oideachaidh anns a h-uile seòrsa cuspair tro mheadhan na Gàidhlig, agus tha buannachd mhòr na chois.

Tha mi a’ smaoineachadh gum faod sinn sin fhaicinn mar eisimpleir mhath air cleachdadh na Gàidhlig ann an dòighean iomchaidh aig ìre poblach agus prìobhaideach. Tha sinn air gluasad mean air mhean gus a bhith a’ faighinn barrachd is barrachd inbhe dha ar cànan agus gun sin a bhith a’ dèanamh cron sam bith air luchd-labhairt na Beurla.

Following is the simultaneous interpretation:

I would say that this is an opportunity to test out the issue as a pilot. If it works, that will be great. If any problems arise, we will learn from them so as to improve for the future.

Many similar questions were raised when we started Gaelic-medium education. People had worries about whether it was appropriate for children to be taught through the medium of Gaelic rather than through the medium of English. We have got past those problems. Gaelic-medium education has been going for 25 years now and it has been highly successful, and nobody says that it is not appropriate for children to learn through the medium of Gaelic. There have been great benefits associated with Gaelic-medium education.

We can see that as an example of the use of Gaelic in appropriate public and private settings, and we are moving bit by bit to get an increased profile for the language. That does not harm English speakers in any way at all.

Have you had any discussion with the Electoral Commission, the Electoral Management Board for Scotland or local returning officers about the practicalities of including Gaelic on the ballot paper?

Cha deach sinn a-steach gu còmhraidhean sam bith le leithid de bhuidhnean. Is dòcha nach eil e iomchaidh dhomh a bhith a’ dol air adhart le sin aig an ìre seo. Chan eil mi a’ faicinn gum bu chòir duilgheadas sam bith a bhith ann am pàipear goirid, le ceist gu math goirid agus gun ach sia faclan innte. Mar sin, chan eil mi a’ smaoineachadh gum bu chòir dhuinn a bhith a’ coimhead ri bhith a’ dùileachadh dhuilgheadasan mòra dhen t-seòrsa sin.

Following is the simultaneous interpretation:

We have not had discussions with any of those groups. I do not think that it is appropriate for me to go forward with that at the moment, but nor do I think that we should expect there to be any problem with a paper that has a short question of six words.

You indicated earlier that you recognise the importance of the referendum, and you said that we could learn from any problems that may arise from the use of the Gaelic language in that referendum. The Scottish people are being asked to make a major decision a year from tomorrow. Do you agree that we should make the ballot paper as clear as possible so that there is no ambiguity for people voting in the referendum?

Tha mi ag aontachadh gum feum am pàipear-baileit a bhith sìmplidh agus furasta a thuigsinn. Tha mi air dreach de phàipear ullachadh far a bheil a’ Bheurla air aon leth dhen duilleig agus a’ Ghaidhlig air an duilleig eile, le aon bhogsa airson taic a thoirt agus aon bhogsa airson a chur na aghaidh. Chan eil mi a’ smaoineachadh gu bheil sin ro dhuilich a thuigsinn. Mar a thuirt Rob Dunbar, thathas ga chleachdadh anns a’ Chuimrigh agus ann an Èirinn agus ann an dùthchannan eile gun duilgheadas sam bith. Tha mi a’ smaointinn gum feum sinn faighinn seachad air a’ bheachd seo gum feum a h-uile càil a bhith anns a’ Bheurla gus an tuig daoine e.

Following is the simultaneous interpretation:

I agree that the ballot paper must be simple and easy to understand. Again, I have a draft of a paper on which the English is on one half of the paper and the Gaelic is on the other, and there is one box to say yes and one box to say no. I do not think that that is too difficult to understand. As Rob Dunbar said, that type of paper is used in Ireland, Wales and other countries without any problems. I think that we have to overcome the opinion that everything has to be in English so that people can understand it.

11:15

Sin ceist chudromach agus tha mi a’ smaointinn gu bheil dòighean timcheall air. Tha mi a’ smaointinn gum biodh e ciallach Coimisean an Taghaidh a thoirt a-steach. Nuair a chuir Riaghaltas na h-Alba a’ cheist air Coimisean an Taghaidh, cha do dh’fhaighnich iad agus cha tug iad eisimpleir de phàipear-bhòtaidh dà-chànanach dhan choimisean. Bha iad a’ faighneachd am biodh paipear-bhòtaidh aona-chànanach a’ cur bacadh air duine sam bith agus co-dhiù a bhiodh trioblaidean na lùib. Tha mi a’ smaointinn gum biodh e ciallach a’ cheist a chur air ais, is dòcha gu Coimisean an Taghaidh, aig a bheil comas ceistean mar seo a làimhseachadh.

Ann an dòigh, tha ceistean eile air èirigh mun taghadh seo, rudan eile a tha gu math eadar-dhealaichte. Mar eisimpleir, airson a’ chiad uair, bidh cothrom bhòtaidh aig daoine aig aois 16 bliadhna agus 17 bliadhna. Tha sin ùr cuideachd, agus is dòcha gum bi trioblaidean na lùib agus chaidh beachdachadh air sin. Tha mi cinnteach gun tèid againn air cuid dhe na duilgheadasan as motha an lùib sin a sheatlaigeadh agus a shocrachadh ro làimh agus tha mi a’ smaointinn gum biodh e ciallach leigeil le Coimisean an Taghaidh beachachadh air a’ cheist seo agus, is dòcha, deuchainn a chleachdadh feuch am faigh iad a-mach co-dhiù a bhiodh duilgheadasan ann.

Ann am freagairt a fhuair mo charaid Iain MacLeòid bho Riaghaltas na h-Alba, bha an Riaghaltas ag ràdh gun robh iad a’ bruidhinn ri cuid dhe na h-oifigearan taghaidh agus gur dòcha gum biodh trioblaidean ann. A-rithist, chan eil mi buileach cinnteach a bheil an t-uamhas fianais ann. Nam bharail, bhiodh e na b’ fheàrr leigeil le Coimisean an Taghaidh sùil a thoirt air agus na ceistean seo fhuasgladh. Mas e is gu bheil trioblaidean mòra a dh’fhaodadh cron a dhèanamh air an taghadh, bhiodh sin cudromach a shoilleireachadh aig an ìre sa, ach mar a thuirt sinn roimhe, bho dhùthchannan eile is coltach nach bi pàipearan-bhòtaidh dà-chànanach ag adhbhrachadh thrioblaidean mar seo. Tha mi a’ smaointinn gu bheil muinntir na h-Alba a cheart cho gleusta ris na Cuimrich agus ris na h-Èireannaich ach tha mi a’ smaointinn gu bheil làn chomas aig Coimisean an Taghaidh seòrsa deuchainn a ruith.

Following is the simultaneous interpretation:

It is a very important point. There are ways to solve any problem. It would be appropriate to bring in the Electoral Commission. When the Scottish Government asked the Electoral Commission the question, it did not give an example of a bilingual voting paper; it just asked whether it would be a problem for anyone, or whether, indeed, a one-language paper would cause problems for anyone. It would be sensible to put the question to the Electoral Commission again, as it has powers to deal with such questions.

Other questions have been raised about the vote. Some things about it are very different. For example, for the first time, 16 and 17-year-olds will have the chance to vote. That is a new thing and perhaps there will also be problems with it, but the issue has been discussed and I am sure that we will be able to deal with any problems, which can be solved and made easier. It would be sensible to allow the Electoral Commission to discuss the question and perhaps to test the bilingual paper to see whether there are more problems with a bilingual paper.

A reply that John Macleod received from the Scottish Government stated that it thought that problems could be associated with the ballot paper. Scottish Government representatives had spoken to some returning officers, but I am not sure that there is very much evidence for there being problems. I believe that it would be better to allow the Electoral Commission to have a look at the question, and if lots of problems arise from testing it would be important for the commission to deal with them then. However, as John Macleod said, lots of other countries use bilingual voting papers in referenda, and I am sure that Scottish people are just as intelligent as Irish and Welsh people are. It is important to allow the Electoral Commission to run that test of a bilingual voting paper.

Tapadh leat. As Angus MacDonald said, stages 2 and 3 of the bill process will be very interesting as regards the pursuance of the argument.

I am afraid that we are out of time. The committee will now consider the next steps. We all agree that it is an interesting petition. As we have heard from Angus MacDonald, we have already been through stage 1, and there are opportunities at stage 2 for members to lodge amendments. Therefore, there is a practical constraint on what we can do because we are talking about an active Scottish Government bill. Nevertheless, I would like to hear members’ views on the next steps.

I agree that there is little more that the Public Petitions Committee can do. However, as I said, there is an opportunity for members to lodge amendments at stages 2 and 3, and that is probably the best way forward.

I suggest that the committee take the opportunity to write to the Scottish Government to indicate that we have been presented with the petition and are considering it, and that we are aware of the legislative programme and of the fact that the bill has moved on to stage 2. I also suggest that we write to the Electoral Commission and to the Electoral Management Board for Scotland to ask for their views on whether the use of Gaelic on a ballot paper would cause, or could be perceived to cause, any issues relating to the distribution of ballot papers for the referendum next year.

It is certainly competent for us to write to the Electoral Commission. The clerk points out that the Deputy First Minister had some discussions with the Electoral Commission and that we have some information about that, but I do not see that being in conflict with the issue of the bill being before the Parliament, so in terms of competence John Wilson’s point is valid.

Do other members support John Wilson’s proposals?

I would be content with that.

Are members all content?

Members indicated agreement.

As the witnesses can hear, we will continue the petition and will write to the Scottish Government to get its views. Both witnesses raised some very interesting points, and I thank them for coming along and giving evidence to the committee today. We will keep them up to date with developments, and we thank them for giving up their time.

I suspend the meeting for a change of witnesses.

11:20 Meeting suspended.

11:21 On resuming—

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Alzheimer’s and Dementia Awareness (PE1480)

 

The third petition today is PE1480, by Amanda Kopel, on behalf of the Frank Kopel Alzheimer’s Awareness Campaign, on Alzheimer’s and dementia awareness. Members have a note by the clerk and the SPICe briefing on the petition. I welcome the petitioner. Thank you for coming. Dr Susan Logie is a consultant in old age psychiatry.

I invite Mrs Kopel to make a presentation of around five minutes. Graeme Dey is also here to support the petition. Mr Dey is free to intervene as he wishes when we are going through the questions.

Good morning and thank you very much for allowing me to speak to you today.

Ladies and gentlemen, I have lost my husband, even though he is still living. Alzheimer’s and dementia are a tough subject. Those two words bring fear to the hearts of so many people: to the ones who live with it, for whom it is a true hell on earth, and to the families of those who suffer, who try to bring back the person they knew and loved. We lose them before they die.

My husband, Frankie, was a professional footballer who started his career in 1964 as a 14 and a half-year-old apprentice at Manchester United. He went on to play for Blackburn Rovers, Dundee United and Arbroath and finally became assistant manager at Forfar Athletic. He did not earn the enormous wages that the footballers of today earn. When his football career ended in 1983, he continued in full-time employment until a few years ago. He was diagnosed with vascular dementia the week before his 60th birthday. At that point, he was a very fit, active man.

Frankie turned 64 in March this year. This man when asked now does not even know how to sit down, never mind how to kick a ball. Every day is a battle, which Frankie is never going to win, with his progressive terminal illness. It is also a constant battle for me with officials and red tape—one that I hope will change after today.

The disease behaves differently in each person’s body. It is no respecter of age, creed or colour or how much money you have in your bank account. Frankie did not ask to be diagnosed with dementia, but I find that he is discriminated against by having to pay for personal care because he is under 65. Free personal and nursing care was introduced in Scotland in July 2002 for people over 65. We pay almost £350 per month for his personal care, which covers 45 minutes’ input each day to give him a shower in the morning and get him ready for bed at night.

I would love to have been able to continue to carry out my husband’s personal care, but his dementia has progressed to the point at which that is no longer possible. It should not matter whether someone is 55 or 75: all personal care should be free in Scotland to all people with dementia when they are assessed as needing it, regardless of the figure on their birth certificate.

I, like others in my situation, am asking, begging and pleading for change to enable us to live what precious life we have left together to the full. I am asking for change so that I do not have to make choices, such as whether to take Frankie out for a run in the car—which he enjoys—to get a coffee and cake, or to buy a Kylie so that he does not lie on a urine-soaked bed. Such a change would ensure that our loved ones’ human dignity and safety is not compromised.

The lack of provision of free personal care for people with dementia under the age of 65 needs to be reviewed urgently. No one under 65 with dementia should be discriminated against. Ladies and gentlemen, I know that I am not the only one who has lost a loved one to this awful disease. I need to know that I have done everything in my power to ensure that Frankie has the best possible quality of life. I cannot make the relevant changes, but I know that you can, and I ask you now to please start making those changes today. Thank you.

Thank you, Mrs Kopel, for that very moving account of your family circumstances. You touched on what seems to be a key issue, which is the need to extend free personal care to dementia sufferers of any age, rather than providing it only for those over 65. Is that the key point of your petition?

Yes—it is about free personal care for those under 65. What does age matter when it is the same illness? It is the same disease whether someone is 65, 66, 76, 45 or 46, but those under 65 have to pay for personal care while those over 65 do not. Many more younger people—those under 65—are being diagnosed with dementia, and, as I think Dr Logie will agree, some of them are not even reaching 65 because of what is happening in their brain. They have a very strong body, but their brain is rapidly dying. Seven, eight or nine years ago, I was one of those people who thinks that dementia is only an elderly person’s disease, but now it has come to our door, and it is a horrible disease. I really feel that those under 65 are being discriminated against because of their age.

Do you feel that the public are aware of the huge problems that dementia creates, particularly as we are all growing older, which may lead to greater problems in the future? Dr Logie may want to say something on that too.

Since we started the campaign, because of my husband’s profile, I have become aware that dementia can happen to anybody. There is now a great deal of awareness about dementia, and you are right that a lot of people are now living longer. Unfortunately, some of those under 65 are not being afforded the opportunity; they will be dead before they are 65 so they will not even get their free personal care.

Dr Logie, on the issue of those under 65, I suppose that the public are generally aware that, as people grow older, there is a greater chance that they will develop dementia, but they perhaps do not understand that the disease also affects those under 65. Is the number of patients in Scotland who are under 65 and have dementia growing?

11:30

I do not know whether it is growing, but I think that there is probably greater awareness. The Scottish Government’s figures show that there are about 2,500 people with dementia under 65 in Scotland, and about 200 people a year are diagnosed with it.

Dementia covers a wide variety of different illnesses. It can sometimes take longer for people under 65 to get a diagnosis because the condition is much rarer at that age. Someone might present as having depression, or they might see a neurologist, and it can take quite a long time for them to be diagnosed.

People under 65 who have dementia also face a particularly difficult financial situation. It is often a very insidious illness, so they may have been underperforming at work for years or not paying their tax properly. If they run their own business, they might be running into financial difficulties because they are not performing as well as they usually would. They may have mortgages or school-age children, or they may have elderly relatives themselves. They have not reached pensionable age and may not have been able to save for their old age. They are often in the prime of life and would be expected to have reached their highest-earning capacity, and then they develop these illnesses. In my experience, such people struggle more financially than those over 65 do.

I suppose that this might be a difficult question, but how do we know the number of people who are undiagnosed? By definition, that is almost impossible to do. It may be that even experienced GPs do not necessarily pick up the fact that a 30-year-old is suffering from dementia. That must be a real issue in our health service in Scotland.

That is right. More often, it affects middle-aged people: two thirds of those with a diagnosis of dementia under 65 will be over 55. However, those people might turn up looking as if they might have stress-related memory difficulties or depression, and women might be misdiagnosed as having menopausal problems. Even with the best will in the world, it can take a while to diagnose such cases, because the diagnosis involves looking at global cognitive deterioration over at least six months. At present, the GP needs to see a history of things deteriorating over a considerable period of time before they can make the diagnosis.

Is the diagnosis very categoric? Do you need to use brain scan technology?

Yes—we would usually do some detailed neuropsychological testing of someone that age. A psychologist would see them and study the performance in different areas of their brain, and there will be scanning. People of that age may need more intensive investigations in order to exclude other causes, so they may need to be seen by a neurologist. It is often quite a difficult diagnosis to make.

Thank you. Does Graeme Dey wish to make any points at this stage?

No—the points have been very well made. I would be interested in exploring, beyond the issue of free personal care, how geared up the health service is to cope with this group of people.

This group of people is often looked after by old age psychiatry services, which is perhaps a bit awkward. Most such services in Scotland will be the same as ours, in which we look after everybody over 65 with any mental health issue and people under 65 with dementia. They are—slightly awkwardly—put in with older people in that sense, yet they are not getting the free personal care that the other people whom we look after are getting. The younger people are often fitter and more active, at least in the beginning, and they may have completely different tastes to older people. There are differences between someone who is 55 and someone who is 85—even, for example, in the type of music that they like to listen to.

In some rural areas, such as Angus, it is difficult to organise specific services for such a small group of people that are also local enough to be accessible. That tension always exists in a rural area. In the cities, it is probably a bit easier to organise specific services or specific day care.

On that last point, there are 3,200 dementia sufferers under the age of 65—

There are 2,500, I think.

Is there a localisation? Is dementia in younger people predominant in any one area of Scotland? Does it occur more in the cities or in rural areas, or on the west coast or the east coast?

Not to my knowledge. There is more alcohol-related brain damage and dementia in the west of Scotland, but I am not aware of any major differences between the major areas.

Mrs Kopel, the petition states:

“There are other uphill battles faced by families. Sometimes these battles are with the DWP”

and

“Health Authorities”.

Could you expand on that, please?

Yes. When Frankie was first diagnosed, our GP said, “Right, Amanda, you have to apply now for benefits,” because Frankie was going to lose his job. I had never done that before for him, but I did it anyway. I remember the doctor saying to me that day, “Amanda, once you get everything in place, you can concentrate on Frankie, because this is going to be a very difficult road for you.”

The first gentleman who came to see us became quite good friends with us, but I remember that he walked in that first day and said, “I’m not going to shake your hand, Frank, because you’re an Arab.”

I am a Dundee supporter.

You will know exactly what that means, then. Obviously, that comment broke the ice a bit. That gentleman started to complete the form, but his words to us were, “Well, I don’t think you’ll get anything, Frank, because you look all right.” That was the first step we took.

Sorry, but was that man from the Department for Work and Pensions?

He was from the local jobcentre and he brought the DWP form. He came back six or seven months later—Frankie had started to deteriorate by then—and he said that we would be able to claim something. He said, “My father had dementia,” to which I replied, “Well, you should have known, then. If you knew that six months ago, you shouldn’t have made that remark then.”

I have had five years of constant battles with the DWP, form filling and going through the rigmarole of someone on the other end of the phone asking whether Frankie can do this or that—for example, go on a bus. I tell them “No. My husband is dying in front of my eyes and he cannot do that.” The final word before I got off the phone—I wish I had £1 for every time that someone said this to me—was always, “I hope he gets better soon.” In an ideal world, I would love it if, the minute someone phones up those departments and says that they have a husband who has dementia or Alzheimer’s, the reply was, “Right. I’ll put you on to someone who understands what you are talking about.” I would love my husband to improve, but it is never going to happen.

I know that the DWP and the Government are trying to sort out the benefits system to make it simpler for people, but all my energy goes into looking after Frankie. I should not—

What help are you getting?

I have a support worker coming in from Alzheimer Scotland—Mrs Brodlie—who is very good. I have a good family and good friends. Frankie goes to day care five mornings a week, usually from 10 o’clock to 1 o’clock, to give me a wee bit of respite. However, I was told last week that, because he is deteriorating and because they do not have dementia status, they are now struggling to cope with him. He has gone to that day care for the past year and a bit, but he is now going to have to go somewhere else. As Dr Logie said, the only places that Frankie can go to have people in their late 70s, 80s and 90s. I feel that they do not have facilities for the under-65s.

Frankie and I have been married for nearly 45 years. We grew up together; in fact, we have been together for 50 years—a lifetime. I want to do the best I can for him. If that means keeping him at home until he passes away, that is what I want. I would like to keep him at home and not to put him in a nursing home, where he will not get the care that I will give him.

I get £3.81 a day carers allowance from the DWP for looking after my husband. That is because I am 63 and I get my small state pension. I do not get the full married woman’s state pension. I get £42-odd a week from the Government. According to the rules and regulations—which I understand—because I did not pay enough big stamps in my working life, I am not allowed to claim the full carers allowance. I get £3.81 a day, which is insulting.

We still have a mortgage to pay. We pay gas and electricity. Because of Frankie’s condition, our heating is normally on; even in the summertime, it is on low. The bills are going up. We still have to have a phone. Because his dementia is changing, his taste buds and so on are changing. We still have to have our insurance. There is wear and tear on things. Things add up, such as mattress protectors—we have to have two or three of those—and duvets and blankets, because he is now doubly incontinent. When he gets up during the night, he can go from bed to bed. If he has soaked the bed, I have to put him in another bed. It is very stressful for me, but I love this man to bits.

That was a vivid and distressing comment on the finance side, which must add so much extra pressure to you.

It does. A few years ago, they said, “Frankie, you’re allowed working tax credit”, so we filled in the forms and so on. About 18 months ago, we were told, “You have to repay it because we made an error.” It was nearly £4,000. We were told that we should have gone on to pension credit. Even up until two weeks ago, they were still hounding my husband for the overpayment.

I started to pay some of it back, but expenses and so on are getting on top of us. Our solicitor, who is trying to fight it, argued with the DWP that, if it had given us the right information first time round, it would have put Frankie on to pension credit, and the amount owing to the state if the DWP had stopped it would have been in the hundreds, which would have been repayable. It is like anything in life: if you have never been in that position before, you do not know.

It may be that you are already dealing with it, but it may be one for your local MSP or MP to take up. I would certainly recommend that you do that.

Yes. Thank you. Two or three months ago, Atos sent us a brief letter—I know that it had to do it—to say that one of Frankie’s benefits would be stopped unless we could provide it with details about how bad he was and come through to a tribunal in Edinburgh to get him back to work.

11:45

I certainly recommend that you seek advice from elected members.

I am trying to make the point that these are all stressful situations. I should not have to be battling that. Not only is my husband in this battle but I am battling for him. When these other things come in day by day—they come in about once a week—it takes away from the care that I want to provide for my husband.

Thank you for bringing your petition to us this morning. You have identified an area that you have ably demonstrated is overlooked currently within the system. We all understand that, sadly, your experience is one that ever more Scots will face. It is no longer something that is set to happen in the future; it is happening to families across Scotland now. Indeed, it might not be an exaggeration to say that at some point every family will have a direct rather than indirect experience of it. In fact, Alzheimer Scotland estimates that 3,200 people under the age of 65 have dementia.

As Dr Logie said, the emerging group will be people in their late 40s who may well be substance misuse recoverers of some sort, for whom the onset of dementia at an earlier stage in life than we might have anticipated is an unexpected consequence. I cannot presume to know the view of the committee, but I think that this is certainly a matter that will be pursued.

I think that you have partly answered this question. Clinicians say that there is no breakthrough treatment on the immediate horizon. As health spokesman for my party, I regularly meet clinicians and ask the question. Whenever I ask, I am always told that it is 15 years away. When I asked seven years ago it was 15 years away and it is still 15 years away now. Some major breakthroughs that were anticipated had to be withdrawn at the last minute, because unforeseen consequences were found. Developing such treatments is a long slow process.

I am interested in Mrs Kopel’s experience. Given that more families will have to face Alzheimer’s and dementia, is the education and training for families and their preparedness currently pretty inadequate? Over and above the issues directly addressed in your petition, which calls for support to be provided for people with dementia who are under the age of 65, something more fundamental needs to be looked at to aid the early understanding of families who will have to face the issue and to give them comprehensive guidance about what they might need to do and how they might need to access support.

Definitely. There has to be more education and awareness. I was asked to speak at a Royal College of Nursing conference on dementia earlier this year to say what it was like from the point of view of a younger person with dementia. The feedback that I got from the delegates was amazing. They said that they learned quite a bit when I told them our story. Alzheimer’s and dementia is now getting mentioned more often, but it must be more of a priority across the board to educate people about it, even in schools and suchlike. The young people now are the possible future sufferers of dementia.

Unfortunately, we are a little short of time. As no other members have questions, I ask the witnesses to hold on for a few minutes as we will look at the next steps on the petition.

I think we all agree that Mrs Kopel’s situation with her husband is a very moving example. We will certainly contact the Scottish Government to ask for its views on the petition. We might also clarify whether there are any moves to reduce the age of eligibility for free personal care. I think that the Government has made some statements about that in the past and it might be worth getting some clarity, because Mrs Kopel made the point that it is the absolutely vital aspect of care. We will also seek the views of Alzheimer Scotland and other groups.

I seek the views of committee members. Do you agree with that course of action?

Yes, I agree with that. The number of people in this group is growing, but I do not think that the numbers are growing in such an alarmingly unmanageable way that they could not be accommodated within the system.

Given that this is a devolved Parliament and some matters are still reserved to Westminster, I would be interested to know what liaison there is between the two health departments in trying to pull together the necessary advice for Alzheimer’s sufferers. In the first instance, I would be interested to know the Scottish Government’s view on that. It may well be that the issue is made harder for people than is necessary because of the political process that we have put in place. If so, that would be most unfortunate and we ought to be able to correct our approach. Such a situation would be unique to the devolved Administrations, given that in England and Wales health matters are under the control of a single entity.

Are there any other action points that members wish to suggest? Do members agree to the course of action that has been suggested?

Members indicated agreement.

As you have heard, we are enthusiastic about pursuing the petition, so we will write to the Scottish Government and a number of other agencies. Obviously, we will keep you up to date with developments.

I thank Mrs Kopel for appearing before the committee. I know that it must have been difficult to explain your very difficult family circumstances with regards to your husband. I also thank Dr Logie and Graeme Dey for their attendance.

I will suspend the meeting for a minute to allow our witnesses to leave.

11:51 Meeting suspended.

11:52 On resuming—