Equal Opportunities Committee

Meeting date: Tuesday, May 15, 2012

Official Report 464KB pdf

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Gypsy Travellers and Care

Good afternoon and welcome to the ninth meeting in 2012 of the Equal Opportunities Committee. I remind everyone to turn off their mobile phones or switch them to silent. There are no apologies for today’s meeting.

Item 1 is a round-table evidence session on Gypsy Travellers and care, with Gypsy Travellers and representatives from the minority ethnic carers of people project, which is a voluntary organisation that supports minority and ethnic carers. Members are sitting round the table with the witnesses. We also have at the table our clerking and research team, together with official reporters, and we are supported by broadcasting services. I welcome the people who are sitting at the back of the room in the public gallery.

What we hear at today’s evidence session will help us with our next meeting, at which we will question representatives of healthcare and social work services, followed by the Government minister who has responsibility for carers.

Before I open up the meeting and we move on to questions, I ask our witnesses to introduce themselves and talk a bit about their situation, starting on my right with David.

I have been caring for a wee while. I stay in Oban. I am not very good at this.

You are doing fine, David.

I am a development worker for the Gypsy Traveller project in north Argyll. I have been working there for about a year, looking at caring issues for Gypsy Travellers in the area.

I live on Double Dykes caravan site and I am a carer for my mother.

I am a Traveller and a full-time carer for my son.

I live at Double Dykes caravan site in Perth. I am here to talk about disability.

I am a Gypsy Traveller and I have been providing informal care for my brother and my father in his latter years.

I am a Gypsy Traveller and carer for my daughter, who is 21 years old.

I am the programme manager for the Gypsy Traveller carer project, which is based at MECOPP.

I am a Gypsy Traveller from Bobbin Mill in Pitlochry. I am looking after a family member who is critically ill at the moment and it is infringing on my ability to go out and work.

Thank you all for that. Most of you will have met the MSPs who are here today, but just in case you have not, I ask the MSPs to introduce themselves as well.

I am the committee convener.

Good afternoon. I am the MSP for Aberdeenshire West.

Hello. I am an MSP for the Highlands and Islands.

Good afternoon. I am an MSP for the Highlands and Islands.

I am an MSP for Central Scotland.

Hello. I am an MSP for West Scotland.

Good afternoon. I am an MSP for West Scotland and the deputy convener.

The committee has had a couple of sessions with people from the Gypsy Travelling community, which have really helped to inform us about issues and problems that you have. A paper has been prepared for and circulated to committee members. Today, we want to get more information from you on specific issues, problems or barriers that you have encountered. The MSPs might raise a number of issues.

I will kick off the questions, then I will throw open the meeting for MECOPP and people from the Gypsy Travelling community to answer them. We have heard quite a lot that hand-held records were meant to be rolled out across health boards, but I understand that their use is pretty patchy. Do you have or have you had hand-held records? That is my first question; I will also ask my second question, if that is all right, then you can respond.

My second question is about raising awareness of Gypsy Travellers and of cultural differences. What problems are encountered when carers come to look after people from the Gypsy Travelling community? I throw that out to you for your thoughts and views on the difficulties that you have had in getting social work or other local authority services to understand your cultural differences that are not being taken into account. Lizzie Johnstone had her hand up, so I bring her in first.

I can cover some of the answers to those questions in my speech later. I was one of more than 100 Gypsy Travellers who were involved in making up the hand-held records and helping to make them widespread among Gypsy Travellers. Whether to use the record was up to the individual Traveller. It was made so that each member of a Gypsy Traveller family could have one of their own. As I said, whether to use the records was up to families.

All the Gypsy Travellers I have spoken to who have used the records, which are still being used now, have appreciated them. In their opinion, the records saved the embarrassment of going back to doctors, because they had all their information in the booklet, which they could just hand over to their new doctors or dentists or whoever they had to go to in the medical profession.

I am sorry to say that, as with everything else, although we got involved and made the booklets, the organisation that produced them fell through and we did not hear any more back. That is usually the case when Gypsy Travellers get involved.

As I said, Gypsy Travellers are still using the records today. Quite a lot still exist. I do not know whether Michelle Lloyd knows whether MECOPP has any of the booklets and I do not know any people who still have them, but Travellers find them useful.

As I said, I might be able to answer the convener’s second question in my speech later—I am sorry that I cannot do that now.

That is fine.

The hand-held records were produced by the national resource centre for ethnic minority health, which no longer exists, as Lizzie Johnstone said. As far as I know, its remit was taken on by NHS Health Scotland. There are boxes of hand-held records at Health Scotland and we have a box in our office. Unfortunately, the records were never disseminated to the community, general practitioners and health workers in the way that was originally planned.

They are well used in some areas, and we certainly still get requests for them, particularly from families who are very mobile. However, I suspect that in other areas there is no knowledge of hand-held records. I have heard about families who have been using them and have taken them to a general practitioner, but the GP has refused to fill them in because they have no knowledge of the system. As with many things, provision is patchy throughout Scotland.

14:15

I attempted to have my details transferred to a hand-held record, but the local health practice claimed to have no knowledge of hand-held records and it refused. Michelle Lloyd mentioned that situation. I wished to reregister, but since that point my details have been lost from the practice’s files, so I no longer have medical help, despite suffering from ME—myalgic encephalomyelitis. Over a 15-year period, I have been unable to access healthcare because I was dissatisfied with the level of treatment that I received from the local practice.

Are you not registered with a medical practice at all?

No. I cut my hand in an accident, so I went down to the new community hospital. Someone who was previously one of my doctors said, “I’m sorry, but your details have disappeared from the system.” I said, “Well, I’ve been registered here all my life.” I attempted to have my details put on a hand-held record, and since that point I have become persona non grata as far as the doctors are concerned.

Even though you have a hand-held record?

I do not have one.

You do not have one.

As Michelle Lloyd said, the local practice refused to acknowledge the hand-held records. I complained to the practice manager and she assured me that she would get back in touch, but I never heard any more about it.

Before I bring in Roseanna McPhee and Dennis Robertson, I would like to know whether that is a general view among the witnesses who are here today. How many of you have or have had a hand-held record? Lizzie Johnstone and Susan Townsley have their hands up.

I have two elderly neighbours who have different doctors, and I took their records down for them. One doctor filled in the record with no problem whatsoever, but the other doctor refused to do so. One of my neighbours therefore has a hand-held record while the other one does not.

Is that under the same health board?

It was probably the same health board, but they were different surgeries.

Were those different surgeries in the same area?

Yes.

So they would be under the same health board.

Actually, it was in the same unit—

It was the same practice, but two different doctors.

Yes.

That is interesting.

On the point about people’s details disappearing from the system, I was helping some Gypsy Traveller neighbours when the main carer died—she was in her 40s and had cancer—and they needed an awful lot done. I managed to get a meeting teed up with the local GP, the social worker and the hospital, but they could not find any records going back more than seven years. There seems to be some sort of practice by which local surgeries do not have the records beyond seven years.

The fellow who I was dealing with at that point has since died. He had mental health issues, and I knew that for a fact because I had visited him in two different mental health hospitals. However, the doctor could not find any record of that. When the doctor checked, the records went back only seven years. That was at the same practice that Shamus talked about. That is perhaps part of the problem.

Thank you for that.

It is disturbing to hear that people have hand-held medical records and are trying to use them, yet GPs are refusing to complete those records.

My question is for Michelle Lloyd. Do we have a list of authorities that are willing to deal with hand-held records and those that have said that they have never heard of them or seen them? At some point we need to try to establish where there is good practice—it does not sound as if there is any—and where there is absolutely no practice. It is an incredibly disturbing situation and it needs to be rectified.

To my knowledge, there is no such list, but you are probably better to direct your question to NHS Health Scotland, which as far as I know took on NRCEMH’s remit. The original idea was to disseminate the hand-held records, a health department letter from the Government and, ideally, training led by Gypsy Travellers. The Government issued the HDL but, to my knowledge, the training element was not promoted among or rolled out to GPs, which might account for why some have never heard of it.

I call Stuart McMillan, to be followed by John Finnie.

I was going to ask a question on that latter point, convener, but Michelle Lloyd has just answered it. However, I have some questions that I want to ask later.

John, does your question relate to this subject?

Yes, convener. Initially, I thought that the system of hand-held records was a trial but, by the sound of things, it was rolled out. I presume that it came with some kind of monitoring system or that some body had oversight of it, but that there has been a singular failure in that respect. I suggest that, at the least, we write an urgent letter to the Cabinet Secretary for Health, Wellbeing and Cities Strategy about those specific issues.

I was just speaking to the clerk about that. We will ask the cabinet secretary for information on the roll-out of hand-held records, including what was involved in it, who they went to and whether anything was followed up, so that we can get a clearer picture of exactly what has happened.

In that communication, we should also ask about the stocks of hand-held records that might be lying about in NHS Scotland’s offices. That would be a giveaway as to whether it took the initiative seriously or whether it simply thought, “Ach, well, now we’ve introduced this, we can forget about it”. Like Dennis Robertson, I am depressed by what is emerging.

As Lizzie Johnstone seems to know more about the matter, she might be able to tell us what is happening with hand-held records at the moment. After your input and input from other Gypsy Travellers, was the system that was finally produced what was needed and the best solution or does it need to be changed in any way?

In the Gypsy Traveller community, there is not a great deal of reading and writing, so those of us who helped to put all this together thought that symbols should be used to cover the basics such as what medication to take, the number of doses and so on. The Gypsy Travellers we spoke to were delighted with that and thought it made the whole thing stress free. I am just finding out from the other Gypsy Travellers who are here this afternoon that doctors have been refusing to complete the records.

I know that many hand-held records were given to the Gypsy Travellers in Dumfriesshire, and they had no problems with doctors filling them in. In fact, I use one for my son, because it saves me having to constantly repeat the same story about what is wrong with him, and everyone I have spoken to has been quite happy with them. I know of others who, because they had to give personal details such as their date of birth, their age, their gender and other things, refused to use them, but Gypsy Travellers still had the choice of using them or not.

Thank you for that.

I have a couple of questions that tie in with each other. At previous meetings, we heard a lot about Gypsy Travellers living in homes rather than on sites or at roadsides. For me, a startling fact that has emerged is the life expectancy of people in the Gypsy Traveller community, which, for women, is around 55 and, for men, is about 15 years less than life expectancy for non-Gypsy Traveller men.

An issue has come up about living in houses rather than in other forms of accommodation. If members of society are watching the meeting today or if they read the Official Report when it is published in the next few days, they might pick up on the fact that living in houses adversely affects the health of Gypsy Travellers. I am keen to explore that. Why does living in a house adversely affect Gypsy Travellers’ health, compared with living on a site or at the roadside?

Even living on a site affects your health. I live in a dilapidated caravan on a site. That is because I am sedentarised. Someone said that the Equal Opportunities Committee wants to hear about what life is like on a site. Frankly, it is like living in Château d’If in “The Count of Monte Cristo”—you constantly seek means of escape, but you do not have the wherewithal to do so. Once you are placed on a site, in effect, you are part of a ghetto. You are stigmatised, you cannot find employment and you do not have any opportunities. I am talking about equal opportunities, but that is something that is alien to me because I know little about it. If you lie staring at a ceiling 24/7, that will obviously lead to the degeneration of your mind—it will lead to mental health issues and will negatively impact on your wellbeing.

I am an example of that, because I live in a house. I moved in for reasons to do with my son. I have written a new poem, because I knew I was coming here. As a woman, I do not like talking about some of the health issues directly, because there are men in the room. My poems express how I feel about being in a house. I feel that my health deteriorated because I lived in a house and gave up my culture. If members have a chance to read my poems, that would make you understand better. I do not want to come out with certain things here—I do not feel comfortable talking about them because there are men in the room.

I live on a caravan site. Over the past 10 years or so, just fighting to try to get improvements to the site has affected my health. It has been a constant battle with the council. It should not have happened that way. It is a battle that every Traveller faces. I have been told that, if I want something better, I should get a house. It should not be that way. I should not have to go into a house and change my circumstances and way of life just to get better standards for my parents and me. The stress of that has really taken its toll on my and my parents’ health over the years.

Will you expand on that? Exactly what kind of things have you asked to get done? Is it basic things that you are asking for that you cannot get?

I have written a note about how it all started off and what it has been like. Do you want me to read it or just to explain?

If you want to read it, that would be fine. It would probably help us to understand.

I have lived for most of the last 30 years on Double Dykes caravan site. I am a full-time carer for my mother. I thought that being a carer was all about caring for someone—I did not realise that I was also taking on the role of fighting the council. It all started in 2001 and 2002 when we tried to get a shower for my elderly mother. At that time, we lived in caravans and the bathroom was in the amenity block. I was told that, because it was a caravan site, we did not qualify for grants and that there was no way to fund adaptations for disabled or elderly tenants.

14:30

Our doctor was good and helped us by contacting the council on our behalf. After 18 months, we got the shower installed. It felt like the council was putting in the shower to shut us up. In trying to get a shower for my mother, we realised that the conditions that we were living in were very poor.

Over the past 10 years, it has been absolute torture simply trying to get information or details from the council, let alone trying to get the aids and adaptations that my parents are entitled to.

I have written countless letters to the council, councillors, MSPs, the Commission for Racial Equality and the ombudsman. I have also visited the citizens advice bureau many times. I have never given up, but some Travellers have, and have gone into housing. I do not think that we would have got as far as we did without help and support from the CAB. The only way I found that I could get information from the council was through the data protection legislation and freedom of information requests. Often, I was refused information, but when the CAB and others phoned, they would be given the information. I spent an afternoon at the council office writing out a copy of the site licence, because the council said that it was not allowed to photocopy it, yet the CAB was sent a photocopy of the same licence.

Travellers caravan sites are built to the minimum standard, to be robust and prevent any damage. Communities Scotland’s inspection report showed that the facilities were below the recommended standard—well below what was recommended for housing. Even the office that the caretaker works in is of a higher standard than the places that are provided to tenants.

Communities Scotland no longer exists. What happened to all the reports that it produced? In one of the advisory committee’s reports Double Dykes is shown as a model site design, but no one asked the tenants what we thought of the design and layout of the site or how suitable it was for tenants. When a group of Travellers and I were complaining about the conditions of the amenity blocks, the head of repairs said that if we were not happy with the conditions and wanted something better, we should put our name on the housing list and get ourselves a house.

In 2005, as the chair of the tenants association, I contacted the CRE and the ombudsman. Since then, the council has applied the unacceptable action policy against me. Every couple of years, the council renews the policy. That is harassment. In the past, I have been threatened with eviction and I have been refused an interview for a job as the site manager. Some of the people I have contacted for help, such as the Central Scotland Racial Equality Council and the council's equalities officer, suffered harassment and threats for taking up complaints on my behalf. A CAB employee was accused of stirring things up because they provided us with advice on our rights. The council says that I am not and never have been officially subject to the unacceptable actions policy and that it has only applied the procedure. That means that I am not allowed to contact the council, apart from one named person.

I contacted the council on my parents’ behalf because their bins were not being lifted. After several weeks of complaining and rubbish piling up, I had to put my parents under the care of social services, just to get their bins lifted. That has seriously impacted on my ability to care for them.

Just last year, I was asked to be a community adviser on a council group that had been formed to try to improve the dialogue with Travellers. Because of the unacceptable action policy against me, I had to ask the council for permission to be part of that group. The council department that had set up the group with the intention of trying to improve things was part of the very same department that imposed the restrictions on me.

Even the Equality and Human Rights Commission said that the way that I was being treated was “poor”, and that I had been “unfairly treated” and “badly treated” by the council, but it said that that still did not meet its criteria for an act of discrimination.

I have lived in a caravan on my parents’ pitch for years as their daughter and carer, but I was threatened with eviction only after taking up the issue of the poor standards of provision that my parents were subject to on the site. Pitches have been overcrowded and doubled up since the site opened in 1982. Twenty pitches were provided when 75 pitches were needed. The council has never planned for the growth in the Gypsy Traveller community by providing other sites. Doubling up was supposed to stop when the chalets were built on the site, but that did not happen.

The ninth term report of the advisory committee on Scotland’s Travelling people, which covers the 1998-99 term, says:

“The health needs of elderly and disabled Travellers should be addressed as a matter of urgency.”

In 2006, after we had complained for years, the Scottish Government provided £3 million for new sites and to improve the conditions on existing sites. Part of that funding was provided to tenants on Double Dykes with chalets. Some of the chalets had adapted toilets for tenants with disabilities. I sat in meetings, making a case and competing with other Travellers for provisions relating to equalities, which basically meant an inside toilet for my elderly disabled parents who were in their late 60s and 70s.

One Travellers’ site should not have to compete against another for funding in a situation in which Travellers are being denied equalities and are fighting for better living conditions and disability adaptations.

I feel that, because I tried to improve things for my parents by getting adaptations, improving site management and trying to keep the site clean, litter free and safe for tenants—especially my parents—I have been victimised by the council. The fight to make things better has also been detrimental to me and my parents over the years.

I also feel that the fight has taken me away from being a carer, has affected my health and increased my stress levels. Believe me, at times I have felt that had I known before I went to the very first meeting what the next 10 years would be like, I would never have attended that meeting just to get a shower for my mum. However, if we do not complain, we will never be treated as equals, and the situation will never change for Travellers. That was 10 years of torture just because we asked for a disabled shower.

Is that level of resistance and discrimination mirrored across all the sites in the country?

Yes

Is there any particular area of good practice?

No, it is all over.

David, if that discrimination has happened to you, could you perhaps tell us a wee bit about your situation?

That situation is all over Scotland and everywhere you travel. Travellers are put down as rubbish. What Fiona Townsley said was exactly right.

I have found it very difficult with the council and with everything that I have tried to get for my daughter since I moved back home to Oban. My daughter, Margaret, is severely disabled and registered blind. I am still waiting for a simple cushion for her to sit on. She got a comfy chair more than a year ago to sit on when she was not in her wheelchair. The chair was bought without anyone looking at the person who has to sit in it—they were just thinking about a comfy chair—and, due to my daughter’s condition, the chair was not suitable. It has been nine months and I am still waiting for the chair. You are made to feel that you must be grateful for everything that you ask for.

At one point, I waited five years for a wheelchair for my daughter. She was unable to attend school because her chair was unstable. The frame was cracked, and the bus drivers would not take the responsibility in case the chair was damaged when transporting her back and forth from school. It has been an on-going battle for the past 14 years—that eventually has an impact on your health.

The constant struggle and aggravation of asking for things that you do not get, which I am sure that other people will probably access far more easily than you are able to, must tell on your health.

There are seven in my family and each one has medical problems. Manhandling my daughter and lifting and transferring her from place to place has caused damage to their backs, spines, and shoulders. I have arthritis on my spine due to manhandling my daughter. It was only in February this year that we got a hoist for her.

Have you and your family always cared for your daughter, or have carers come in and helped?

No carers have come in; all the care is done by my family.

Is that because you do not want carers to come in, or because the care offered is not suitable for your daughter?

Basically, yes. For instance, I have never asked for respite care in my life—that is not something that I have wanted. A friend that works with us told me that my daughter and I were entitled to respite. I agreed that my daughter could go somewhere, but she is not comfortable among strangers, so I suggested that one of my older daughters, who knows her and has been caring for her all her life, went to look after her. However, respite was refused because the council wanted to bring in somebody from outside to take my daughter away for a week. Margaret will not spend a night on her own with strangers—she has never been away on her own. I was therefore refused because my other daughter was not allowed to go with her.

To go back to what Stuart McMillan said about living in houses rather than on sites, I have lived in houses, and in halls of residence as a student, and that was fine because no one knew that I was a Traveller. I was engaged with and invited in, and the door was thrown open.

However, when I moved to my home town from Plockton, where my job had folded because I had a temporary contract, I registered on the site. I had a caravan with no running water, sanitation or electricity; there was none of that on the site, although it had been there since 1947.

I got some part-time work in the college in Perth, so I took a flat in the north end of the town, but no one spoke to me. People who I had been to school with would go silent when I walked down the path. I would come home at night to find a note on the door that said, “Go home, tink—we don’t want you here”. I was isolated.

If you are a Traveller living in a house, you are generally isolated and cut off from your own culture. Most people who live in those conditions feel as if they cannot talk to anyone if something goes wrong, and that will obviously have an impact on their health and on their mental health.

To go back to Fiona Townsley’s point, when my father took ill with a stroke, I was running up and down to the site where he was, because there was no one there—the rest were away working or at university. That was fine, until my temporary job folded again due to lack of funding for further education, and I ended up having to apply for housing benefit. The council withheld the housing benefit because it said that I was spending too much time on the site with my dad. I said, “Well, who’s going to look after him? He’s got no electricity, he’s nearly 80, he’s had a massive stroke, and he won’t take any carers or any outside help from the wider community.”

I—not the council—took the case to a tribunal to sort it out, but by that time I had been evicted from the flat. I went back into the caravan, and since I have been registered there I have never got another day’s work in the public sector. All my part-time jobs have been in the private sector: in an animation company, providing Gaelic translation to the college and working as a tour guide in Blair castle.

The private sector has given me work—the jobcentre even found me some work teaching literacy. However, I have not had a single day’s work in the public sector since I moved to the site and had to start complaining to the local authority about conditions on the site, which ended in chalets being provided in 2010 with electricity and running water. That is the first time that we have had amenities since 1947. My father was paying rent and rates, and then council tax, for no amenities for all that time, which is a disgrace.

Fiona Townsley talked about being targeted as a nuisance complainer. I came by a whole stash of internal e-mails from the local authority. Someone gave them to me—I do not know who, and I do not know why. They showed that the council’s equal opportunities officer had resigned because she said that she was being racially harassed and that she and the complaints department had been told not to act on any complaints if the name of the complainer was McPhee or Townsley.

That was me and Fiona: we were complaining quite substantially to try to get a better standard of living on the sites. That was all; it was nothing more—just hot water, electricity and the basic amenities that everyone else gets.

Just to add to Roseanna’s comments, when I came back from having taught English as a foreign language in Spain, no work was available in my home area. My father had suffered a stroke, and I had the pleasure of promptly breaking up Roseanna’s furniture and putting it on my father’s coal fire as kindling. She never received any compensation, having won her tribunal, for the loss of all her effects.

When we approached the council for an upgrade, we were told that we lived on an unauthorised site, despite the fact that it had been sanctioned by the secretary of state in 1946 and I had all the paperwork. I had to go through the rigmarole of producing the files for senior civil servants at the equality unit before any upgrade was forthcoming. Since that point, we have been completely excommunicated from all dealings with the local authority.

So, if you try to improve your living conditions and standards, and you try to get what you deserve, you are excommunicated.

Yes.

You are targeted in looking for employment, and you get nothing, not in the public sector.

You can access only private sector employment.

Yes.

14:45

I have a factual question. Which council are Fiona Townsley and Roseanna McPhee talking about?

Perth and Kinross Council.

I am talking about Perth and Kinross Council, but from stories that I have heard from other Gypsy Travellers I assume that there are similar problems in other areas.

A lot of good people in the public sector are working to do their very best across local authorities and across agencies, but we have heard some pretty damning indictments, in particular Fiona Townsley’s compelling story. It strikes me that the Scottish housing quality standard could be used to address a few issues. I do not know what exactly is defined as a house, but it seems ironic that great efforts are put in across local authorities to bring properties up to a certain standard with the exception of anything attached to a Gypsy Traveller site. It surprises none of us that, as Fiona Townsley said, the site manager’s office was of better serviceable quality than the fixed accommodation on the site. Maybe local authorities care too much about the wellbeing of the computer or electric fire that may be in there and should be elsewhere.

Before I came to the committee, I checked the facts with a member of my staff, because I am dealing with an issue on behalf of a Gypsy Traveller. It is obviously a confidential matter, but I can tell you that, from 24 January until today, there have been 26 communications about a matter that is still unresolved. If that is the experience of my staff, who regularly deal with complex cases, on an issue that seems, on the surface, to be fairly straightforward, I can understand the frustrations of a member of the public who is trying to resolve issues.

Fiona Townsley used a really interesting phrase when she said that the council had not “planned for the growth”. Everything that we hear is about domesticating—I do not mean that to be an offensive term—and putting people in houses. If we genuinely value diversity, we plan for growth. Populations should be growing, not shrinking because the public sector has not responded properly. There are a lot of challenges. I would like to look behind the Scottish housing quality standard to see whether anything that is connected with that legislation can be used to improve the lot of Gypsy Travellers.

I will go to Stuart McMillan, Annabel Goldie and Lizzie Johnstone—unless Lizzie’s point is a specific response to what John Finnie said.

Yes.

I will bring you in now, in that case.

In 18 years—I do not know whether to say thank you—five different councils have had to house me 11 times. I have moved from one house to another. I have had a few weeks or a few months in each house. I was lucky to get 18 months in one place. That has been going on for about 18 years, as my son is 18 years old. You can imagine the discrimination and prejudice, from councils as well as from people in the local community.

When one person has that amount of accommodation, you would think that the councils would have looked deeper into what was causing that to happen, but they passed the buck. To keep me quiet and keep me peaceful, they moved me on. I would not mind, but I would not put my dog in the places that they put me. I was beside all the most undesirable people, who perhaps needed help themselves—I am not prejudiced against anybody who has a problem, because they develop that problem in the beginning because of a problem. In 18 years, I have had 18 houses from five different councils in the places that I have had to be moved to.

Have you been moved because you have asked for something to get done in your property?

It is about getting things done in the property and not getting to live peacefully there. Do you know what I mean?

Have those problems come from your neighbours?

From the neighbours. My son was severely epileptic, so I had to have safety measures round about the house for him, in case he fell anywhere and took a seizure in any part of the house.

We had to have specialised rails for the stairs and the bathroom, but it took longer to get some of them. As Mary said, you wait God knows how long for a safety rail to be put in or for something on the back door. The house itself was not suitable for a person with my son’s condition. I am not meant to have an upstairs and downstairs—I should have been all on the one level. I should not have been given a shower; it should have been a bath. It was all things like that. They just said, “We’ll give her a house and she’s over that problem,” but it was just one thing after another.

Look how many people are on the waiting lists—millions of people are waiting for a house. When they get wind that a Gypsy Traveller has been given a house, they say, “I know she had a house in this or that area of the town. I’ve been on the list for three years. How come that Gypsy can get a house but we’re still waiting?” When folk find out, you wake up in the morning and you have no car left, your windows are broken or bizarre things have been put through your letter box—things that you would not do to another human being.

What is the longest that you have been in one house before you have been moved?

I am in the one that I am in now because I did a swap—I wanted to move. The longest that I was in one place was about three years, but I had to stay because I had hospital appointment after hospital appointment. I had to endure it and put up with everything that was going on about me. I did not have a car and could not afford to replace the motor that was damaged, so I had to stay in the same house for about three years. It was not a suitable house for someone with my son’s condition.

I want to clarify something that I have heard today. Local authorities appear to think that if they put a Gypsy Traveller in a house, that is the accommodation issue resolved. Once a Gypsy Traveller is put into a house, the council then backs off and it is up to the individual to do whatever with their life. If they have caring responsibilities, they just do not get any caring assistance from bodies—or, if they do, it is sparse. Basically, they are left to their own devices. Is that a fair summary of what we have heard so far?

Witnesses: Yes.

When people live within the Gypsy Traveller community, the community all get together to help—it is not about the individual family; the community will help with caring and facilitating when needed. If you are placed in a house, that element of assistance tends not to be there and, as we have heard, you are isolated—you are left to yourselves. I suggest that that is a negative point about living in a house instead of within the wider community. Is that a fair assumption?

That is what a lot of my speech was going to be about, as well as why I was given a house in the beginning. If it is okay, Mary, I will get this over and done with.

Okay.

Sorry. I have not got anywhere else to go—it is just nerves.

My name is Lizzie and I am a mother of three with a son with special needs. To me, it feels strange to say that I am a carer because I am just a mother. Eighteen years ago, I did not know that I was entitled to extra support and help. Being a carer affects your own health, too. Lots of people have said that they do not know how to reach Gypsy Travellers. They do not know how to work with us and we get called hard to reach, but we are honestly no different from anyone else.

Yes, there are Travellers who are a bit wary, stand-offish and offend easily, but that is only human, especially if they have been treated badly. But I think it is just about building up trust and relationships.

Big carers organisations say that they are open to all, but how do we know where they are or what they do? A lot of Travellers would never go near a place like that. They might say that Travellers are included along with everyone else, but really that is just passing the buck. Surely it is up to them to tell us about what they do or the services that they can provide. Because of my circumstances, I took it upon myself to get help, but not everyone has that confidence. Others might see it as shaming to ask for help, even when they do need it

It is better to reach out to Travellers face to face and person to person, because that way you start to build up trust. You get to know that person and who they represent. Usually you can tell what their individual personality is like. You can sense if they are down to earth and easy to talk to or not. We can be wary of suits and briefcases—sorry—but if you are just in casual dress and, importantly, have a smile on your face and a sense of humour, I would feel more confident speaking to you.

For me trust is 100 per cent important and it does take time to build up. It is not enough just to do a survey, to include a Gypsy Traveller box on a form, or send a leaflet. That is not enough to get Travellers involved.

The other thing for Travellers is that we do things and all seems well and good. We go to meetings, give information, share stories and personal things, and then things backfire. It feels like we are being used and treated badly. It is tiring and frustrating going over the same information time and again. Take the hand-held health records: they were a good idea and a lot of work went into them, but then the project that did them closed down.

It is all talk and no action—I am sorry, but this is the way I see things—and to be honest that does sicken me. The worst is when they do not even bother to get back to us, even if it is just to say why something did or did not happen. That is just respect isn’t it? It just ends up making things worse and so much harder for the next person who comes along. Lots of Travellers do not get involved because they have been let down and ignored for so long.

I know that I had to move into a house because of my circumstances as a carer for my son, but that does not change who I am. I am still a Traveller and, to be honest, it does anger me that I had to do that. It still makes me feel bitter that I had to deny who I am to get the services. It was not just the going into a house; it was also being treated like I had leprosy or something by the community, going through so many houses, uprooting, packing and knowing you might face the same again. The house did give me positive things too, like getting the weans a steady education, and getting myself educated—that’s a laugh—to better understand procedures and rights. There is warmth in a house, but the discrimination that I faced still angers me today. Some take to drink or drugs. Me, I wrote poetry. It sounds daft, I know, but it is true.

In the house, you can get isolated and you can lose communication with your own folk. It is not just that, though. You miss the closeness and having someone to chat to, have a laugh or share a story with, your family and the people you have been reared with all your life. They know your ways and your culture. You lose the support that you get from them, too, so you are even more isolated as a carer.

Before I came I was trying to think of what has helped me, or examples of good practice, and to be honest there have not been many. It just seems to have been down to an individual person. I could count a handful of people who helped me, such as the doctor who took the time to explain about the disability living allowance, and the teacher who noticed that my son needed a hearing test. There are others, such as Michelle, but that is it. It takes time and trust and there are no short cuts. Thanks for listening.

15:00

I have written a poem that is not directed to anybody, and I hope that it does not cause offence to anybody, but perhaps it covers some other things to do with how being in a house makes me feel. I hate staying in a house every day, although, as I have said, there are positives in staying in houses.

“Are you sitting comfortable

Are you listening

Are you awake

Please take notes

I really don’t mind

I am a Traveller

I am a mother

I am a full time carer

To my son

It hasn’t always been easy

In fact I can say

It’s been a nightmare

At times over the years

I have felt frustrated

I have felt isolated

I have felt suffocated

No one taking

Any notice or understanding

How I am feeling

Like an animal trapped in a cage

Screaming to get out

Why can’t someone show compassion

And realise I need help

To figure out even my son’s medication

As I can’t read or write

It’s not my fault

I am only doing my best

Thought I made the right decision

Moving into a house

Giving up my culture

And ways of life

So my son

Could get the proper healthcare he was entitled to

Like everyone else

For God’s sake

Please don’t let other Travellers

Suffer the way I had to.”

That is excellent, Lizzie. Thanks very much for reading that out.

I would like to pick up on a couple of things that you have spoken about before I bring in Stuart McMillan. You mentioned carers centres. Have you ever been involved with or used a carers centre? Do the other people here use a carers centre? Do you know where the carers centres are?

You also touched on trust. I imagine that building a relationship with a named person helps with accessing services—the named person will explain what is available, and trust can be built through one-to-one relationships. Does that not happen? Are there different people all the time?

I will talk from my own experience.

For the first few years, it was hard for me even to understand the fancy words that the doctors used, for example, and for me to speak up. I could not read or write, and obviously I felt that I was going to cause more harm to my child, as the doctors told me the dosages to give him to control his seizures but I could not read what was on the bottle.

A few years down the line, I had a friend in the house. For years, I denied that I was from Gypsy Travelling people because of the discrimination that I had suffered, but when I became friends with that person and felt that I could trust her, I told her the truth that I was a Gypsy Traveller. She introduced me to a family centre and, obviously, lots of opportunities opened up to me. I could learn on different courses—and I could learn to read and write. I was like a sponge; I could not get enough of them. That was for my personal benefit. However, although I could then read and understand things, I still did not have confidence or courage when I took the bairn to the doctor. Sometimes when I was in the doctor’s surgery I saw all the things that people from the carers associations put on and the different things that were available, but I was still too embarrassed to approach them because that meant that I would have to get involved with another stranger and would have to open up again and repeat everything that I had already said to the doctors. I would not go to them because of my shame.

I did not know anything at the beginning. I did not know about the DLA, and I started to laugh when someone told me I was a carer. I said, “Don’t be so stupid—I’m the wean’s mother.” Do you know what I mean? It did not register with me that I was a carer as well as a mum. If you do not know anything, you will not miss out, but it makes me angry when I know that things were not available that should have been available for everybody around this room. My son should have been entitled to a carer. I am not bothered about the money aspect; the most important thing is the health side of it. My son should have been able to get medication and his prescriptions while I stayed in my trailer.

I believe in my heart that if I had stayed there, I would not have suffered from as many of the things that the doctors expected me to take a rake of drugs for. I would not take the drugs that I was being prescribed to calm me down and deal with my depression and all my different emotions, because popping pills was against my culture and my beliefs. I did not believe in drink or anything like that either, so when I learned to read and write I put my anger down in writing instead.

My wean should have had whatever any bairn or human being in this country is entitled to. I gave up my lifestyle for him for 18 years, but when I look at him now and see what he has overcome I would do it all over again. As I say, there have been positives and benefits to living in a house. I feel clever because I read and write a bit; my spelling is crap, but I can get myself understood better, fill in my own forms and help members of my own family who need something done. To me, that alone is an achievement and I feel proud of myself for having done it. However, I get claustrophobic; in fact, I am starting to feel claustrophobic in this room because there are no windows open. I hate being crowded in a room and feeling like there is no escape. It is a horrible feeling and the only way I can get it across is by describing it as a wee animal—like a wee dog—being trapped in a cage and trying to scrape its way out. That is exactly how I feel—you can’t breathe.

I cared for my mother every day for six and a half years and, like Lizzie, I felt trapped and became depressed. I was completely isolated and on my own; I had no help or guide. My mother has dementia; at night you could hear her shouting for miles and I got no sleep, rest or anything like that. I know what Lizzie is talking about.

That is what I am saying. I did not have the support of my family. It is not just the country people who suffer discrimination; I can say hand on heart that I suffered discrimination from my own Gypsy Travellers. Some of my own close family members victimised me; it was like they had predicted it or something. They said, “What are you becoming a buck for, Lizzie?” I am the only one of 11 brothers and sisters who lives in a house but I know that if I had had my sisters, my aunties or my cousins round about me in trailers I would have got the help I needed. If I had said, “I can’t handle it any more the day”, I could have gone for a walk or my sister or someone else would have said, “Lizzie, you need a wee break. We’ll watch your bairn for you today”, and I could have gone away for the day. However, if you move into a house in the middle of a giant scheme, you do not know another living soul.

We cannot even speak in our first language. The school teachers sent me a note back from the nursery, saying, “We can’t understand your little boy because he’s speaking a different language”. I had to lie to my children, telling them to lie to their pals and saying, “Don’t speak in any weird way”. They had to deny their own culture and their own blood.

I have been along to carers centres and have asked for help from carers support services, but the kind of support I was looking for was for me, not for my parents. I am capable of looking after my parents—they live on the caravan site—and I get support and help from my family. However, I wanted something to take the pressure off having to fight this constant battle against the barriers that the council was putting up; it was running me down and getting me stressed. The support that carers centres offer is to get someone in to look after your parents and give you some time out. My parents would not have liked that—I would not have liked that either. I would have preferred the carers support services to support me and act as a go-between to help to get disability adaptations, get bins lifted or get the council to change things.

In most Gypsy Traveller communities, families prefer to care for themselves. There is no way that my elderly parents would want someone to come in. As David said, we just need support for the carers: someone to help you and ease some of your problems. That is not happening. Things are designed around having someone come in to look after the people you are caring for, so that you can go on holiday. I did not want that kind of help. I felt that it was not tailored to the Gypsy Traveller community.

Another thing that I took offence to was the advice I got on what to do after the person you are caring for dies. Within the Gypsy Traveller community it never crosses your mind that that will happen, so that advice is like a slap in the face. I have spoken to other people who have been in the same circumstances and they did not want that kind of conversation. We do not look at that—we just look at the day to day, and at being with the person. We do not think that somewhere down the line, things will change.

I do another job: I work at the North Argyll Carers Centre in Oban, so I am a carer support worker as well. I hear what Fiona Townsley says about the conversations about what to do after someone dies. I am surprised by that, because we should be in the present—we should be in the now.

I have learned a lot to help me do my job. We were lucky, in that we had links with the travelling community in the Oban area, which allowed us to make links when we started the MECOPP project with Michelle Lloyd. The North Argyll Carers Centre has an organic service, in that we try, as much as possible, to give an individual service—to give people what they need. We recently got funding from Shared Care Scotland to provide absolute individual respite, which has been wonderful—it is lovely to give something back—although it is unique. It is important that we give positive feedback when there are positive things.

I learned that, in my work with MECOPP, it is important to meet with people, give them time, and listen to them. The overwhelming thing for me is that people have felt for a long time that they have not been listened to. There is mistrust there, and there are more barriers than that, because although all carers can suffer from isolation, there is almost a double isolation when you are a Gypsy Traveller, whether you are in a home or on a site. One person described it as an open prison, which really affected me.

It is important to meet people where they are comfortable, and for them to feel as if they have been listened to. It took months for a lady who I had supported to have the courage to apply for adaptations to her house, because of the barriers that have been in place for years. However, I see little changes happening, so you have to hang on to that hope.

If it was not for Linzi Ferguson and the carers, I would have not got very far, because I cannot read or write. I had great stress trying to care for my mother for six and a half years. I have been in a house for about 12 and a half years, and living there did not help much, but before that we stayed on sites and places like that, which was even worse.

You had support, however.

I have had support from Linzi and the carers, which was the only good thing. It took me nearly six years to find out whether there were carers or anything like that. My mother was independent and so am I, but I was scared to ask for help. I was scared to go to the authorities and scared to go to the doctor, just because I was a Traveller.

That should not happen.

I am just trying to explain it the best way I can, but I am not doing very well.

No—you have explained it really well.

15:15

David McDonald is a good example. It is rare for a man to take on that role. I take my hat off to him, because it is usually the woman who steps in. That shows the love that he has for his mother, although we all love our parents. It also shows what the Gypsy Travellers who are here today are explaining: we do not like ootstrangers. It took David six and a half years before he felt he had the courage and trust to ask somebody for help. We would rather do it ourselves if we possibly can. In this day and age, we should have the confidence to ask for help if we need it or to ask for something to be fixed in a house. The barriers have to come down.

There are people who genuinely want to help in local authorities, but they need to realise that just putting a card through the door is not enough and that they need to follow up on that. They should not think that the onus is then on that person to get in contact, because the person might not even be able to read the card. It is important to get that across.

I want to reinforce some of what has been said. I read the evidence from some of the national carers organisations. We have had dialogue in the past, when many of them said that their services are open to all or that carers centres respond to local needs. What we have heard today, and what the MECOPP evidence suggests, is that carers centres are in one place and many Gypsy Travellers are in another—the question is how that gap will be bridged. Currently, we work with more than 60 Gypsy Traveller carers, but I could count on the fingers of one hand those who have accessed a local carers centre. As long as nobody attempts to bridge that gap or do the outreach work, the issues will never be resolved.

All carers face some of the issues that we have heard about today, but many barriers and difficulties are perhaps unique to the Gypsy Traveller community. One of the most important is the lack of knowledge among service providers about the Gypsy Traveller community and culture. Another is stereotyping. Our report “Hidden Carers—Unheard Voices” lists some of the appalling examples that we have come across. There are regular breaches of confidentiality, but that does not happen with other carers. It is still deemed acceptable to refer to Gypsy Travellers in a particular way or to target a particular family or site. That is not acceptable. Until those issues are tackled proactively in a targeted way, not much will change. People will have to go that extra mile before the issues are resolved.

All bodies that are in receipt of public funds are good at monitoring who uses their services, but we sometimes have to take a step back and ask who does not use our services and why they do not use them. Some carers organisations need to do that. I am particularly interested in those gaps in relation to the national carers organisations. To my knowledge, we are the only carers organisation that actively works with Gypsy Traveller carers, with the exception of the North Argyll Carers Centre, with which we are in partnership.

I want to pick up on the issue of funding. MECOPP has funding for another three years. Will you have specific projects to do with raising awareness of caring issues in the Gypsy Traveller community?

We will come back to that, because a few people want to speak first.

I am not a carer—I am the one who has to be taken care of. I live on Double Dykes caravan site in Perth. I started using a wheelchair about two years ago after I had to have a leg amputated. That was because of vascular problems caused partly by me neglecting my health and being reluctant to ask for health advice.

When I finally went to a doctor, they kept me hanging on a long time, too. I was in hospital for four weeks but my problems started when I got home. There was no wheelchair access to the chalet and no access to the bathroom. I could not get into two of the bedrooms because the doors were too narrow. It took 11 months just to get the outside steps changed; until then, I had to be carried up and down the stairs by family members. At first, I refused the new steps because they were not suitable—I needed a ramp—but I was told that it was the steps or nothing because the chalet was too far forward and the ramp would have gone on to the road on the site. I have now had the new steps for a year and have fallen six times because it is awkward going down them with a leg that does not bend at the knee. One day, I even fell in front of the site manager and he and a workman had to lift me. It really was embarrassing.

One day, my husband went out and accidentally left the toaster on. I was lying on the bed and the fire alarm went off. I realised that I was not going to get out if there was a fire—I was trapped. That night, I dreamed about it and took a panic attack, which resulted in my being hospitalised. You have to experience something like that to realise how frightening it can be. After that, I thought about getting a house—I thought that it was my only option, even after living on the site since 1984—although I really did not want to move into a house.

Recently, I have finally been told that I will get the lift that I asked for. It should take six to eight weeks, and I cannot wait. I feel that I will get some of my independence back and not be so reliant on my carers—my husband, my daughters and my son. They all have their own lives, too, and I hate being a nuisance. I get frustrated at being cared for although I am lucky because I have family nearby. What about other Travellers who need care but whose carers have nowhere to stay?

It took over a year to get the shower in the bathroom changed, but there are still problems as it is too narrow, so someone has to be with me. There is no privacy for me. The worst thing about getting anything from the disability people is the waiting, and there is usually no communication. If they would even just keep in touch or say that they are working on it, that would help. It makes you feel as though they have forgotten you. If you phone, it is a machine that answers, and they do not return calls. When they built sites, they did not think about someone with a disability or an old person. My mother lived on the site for over 15 years but eventually had to go into a house at the age of 74. When Perth and Kinross Council agreed to put in chalets on our site, we tried to get them to put disabled chalets on every bay for older people or people with a disability, but the council said that there was not enough money.

We get treated differently. Travellers are made to feel grateful for what little we get, even though half the time it is half a job. When we asked for a ramp, I was told, “Do you not think that the council has spent enough on this site?” That made me feel that it was my fault. Before we got gas heating, another council official said, “If it was up to me, you wouldn’t get anything else because the council has spent enough on this site.” The joke is that it was not even the council’s money—it was Government money. The council makes you feel that it is your fault. Do other tenants who are non-Travellers get told that, too? I don’t think so.

Thanks for that. That gives us a clear picture of the problems that you face. It is ridiculous to have to wait that length of time to get adaptations.

I cannot just say, “I’m going for a shower.” I have to wait until someone can take me into the shower and bring me back out again. If the shower was bigger, I could use a shower chair. At the moment, I cannot do that. I had the operation two years past in April and I still do not have any privacy—even for having a shower.

There are two bedrooms in my home that I cannot go into, because the doors are too narrow for me to get through. For what must have been nearly 11 months I had to be carried up and down the stairs outside the chalet, because they were ordinary stairs—they were no good for a wheelchair. Then the council got someone to build a makeshift set of stairs. They are not even proper disability stairs. They were built to fit the chalet, not to fit the person who needed them.

I hope that I will get the lift in soon. At least that will give me some more independence—I will be able to go up and down myself instead of waiting for one of my family to take the wheelchair down. At the moment, they take the wheelchair down and I walk down, so that is hard work for them as well.

Yes.

There are some interesting things here and I cannot help talking about them—

That is fine—you can carry on.

It is just that what Susan said about the issue with the wheelchair was interesting.

I agree with Susan. We only got the inside toilet and the disabled toilets when we applied for funding and we competed with other sites—with other Travellers—to get improvements.

I always try to look at both sides of a situation and it is good doing the training days with Michelle, Lizzie, Susan and the council, because we can sit down in a group, put across our side and hear the council side. I regularly hear in those training group meetings that council employees are really frustrated, just the way we are. Some of them feel that their hands are tied and that they have no control over senior management. The people who are the decision makers never attend the meetings to hear the problems.

From a Traveller’s point of view, it has been really good to sit down and listen to what the council has to say and put across your side. We do case studies—we give a Gypsy Traveller’s point of view and ask, “How would you fix the situation?” When a council employee tries to fix the situation from the Traveller’s point of view, they find that they cannot do it—their hands are tied. They feel so frustrated. Council employees start arguing among themselves in those group meetings. It is just so good to hear that council employees can sympathise with us, but their hands are tied because of the circumstances.

What you say about competing for funding is interesting. Do you mean that if there is more than one site within a local authority and one site gets an allocation of money spent on it, the other site does not?

The only time that the sites got done up was when the Government provided £3 million a few years ago. I know that Perth and Kinross Council likes to say that it made contributions too, but it was a capital financing loan and we have high rents to pay back the loan. We will pay back all of the loan, so at the end of the day the council pays nothing towards Double Dykes.

The £3 million from the Government was to cover new sites, stopping sites and the upgrade of existing sites. Some of the Travellers put forward an argument for funding for their children and some put forward an argument for funding for their disabled and elderly—that was the argument that we put forward. I attended meetings to say that we needed the funding for Double Dykes and I felt that I was competing with other sites. I felt that if another site got funding, we were going to lose out.

I put my argument across really strongly, because there was only a small opportunity to get the funding—we were up against a time limit. At one point, we thought that we were going to lose out on the funding if we did not get all the information and everything together in time. We ended up getting funding for the disability adaptations and for inside toilets, although the disability toilets in the chalets are not really suitable for someone in a wheelchair or for someone who is elderly and frail.

I am interested in what Fiona Townsley has been saying, because there are minimum standards for access facilities for people with disabilities. If facilities are put in that are not compliant with the standards, it is pointless putting them in in the first place.

We know that there is competition for money for just about every project. However, what has come across to me is that although there are sites, there are probably not enough of them, they probably do not have enough pitches and the facilities are inadequate. In relation to minimum standards, if there was a template for the number of pitches on a site, what would it be?

We need to start listening not only to the Gypsy Travellers but, as the witnesses have said, to the council to find out what its frustrations are. The council needs to listen to you and we need to listen to you, and then we need to take things forward. We must understand fully what has happened and is happening to you. Putting in something that is inadequate and of no use is even more frustrating for you.

15:30

Yes. As Susan said, the council said begrudgingly that it had spent too much money on Double Dykes and would not be spending any more. Me and Susan were the Gypsy Traveller representatives at meetings with the council—there were architects, two from housing, two Gypsy Travellers and two from community care, I think—when the caravan site was being upgraded. We were all supposed to be consulted about what was happening. However, halfway through the meeting me and Susan were told that we were no longer invited, and everything just went downhill from there. The council put the chalets in the wrong place and when we moved in we were told to take everything down because the chalets had to be moved, although we had advised the council that it was putting them in the wrong place.

The insulation standards were poor, so the council recently had to put in gas. I have been advised by SCARF—Save Cash and Reduce Fuel—that that will not help because the installation of the chalets is so poor that all the heating will still go out if we get a bad winter.

If the council had listened to the Travellers, kept them in the meeting and consulted them, things would have been different. However, the council thought that it could get four transit pitches on to Double Dykes, so they evicted us from the meeting to change the plans to put in those pitches—although they never happened.

They were supposed to take us down to see one of the chalets when they were getting built, but they pulled out of that as well. We would have told them that the electric heating that they put in the chalets was no good. We already knew that they were no good whatsoever. We would have told them that if they had showed us the chalets and it would have saved them fitting the gas; it would have saved us and them a lot of problems. However, they pulled out of that as well—is that right?

Yes.

On that point, for a long time it seemed that the council was playing us at Bobbin Mill off against the people at Double Dykes with regard to the funding that was available. It would qualify that by saying that it was down to the number of heads at Double Dykes, and because there were fewer of us at Bobbin Mill we would not be granted an upgrade.

When it came down to the upgrade itself, the council belatedly put together a bid for funding from the pot when there was only a week left until the deadline. That bid was due to me and Roseanna exerting pressure on members of the equality unit and reminding them that they had a commitment to upgrade under the Housing (Repairs and Rents) (Scotland) Act 1954. They had to go and check that out with their legal team and get back to us, otherwise we would not have got any upgrade and would be classed as unauthorised. The council is actively playing one site off against another to cause internal friction and division.

Three more members will ask questions, then unfortunately I will have to start winding up the meeting. Stuart McMillan is first, to be followed by Annabel Goldie, then Jean Urquhart. I then want to go back to Michelle Lloyd on the question of funding.

We will put together a report at the end of the inquiry. I dare say that the list of recommendations will be as long as my arm. I am keen to hear from each of the folk here one or two recommendations, whether they are focused on caring, health, accommodation, education or whatever. I am keen to hear what you would like to see take place that would benefit how you live.

I have two things to say. First, on the recommendations, I see no efforts by anyone to recruit Gypsy Travellers to work with Gypsy Travellers. As we have heard from people round the table, most Gypsy Travellers do not want people from the wider community coming into their home.

No training is given to family members, but we are taught from a very early age to look after each other if we are ill, and to care for elderly people and little brothers and sisters. We have a lot of experience of that without ever having been to school or anything like that.

The second point relates to my circumstances. I was working part time, but I had to shelve that job because the time that I was spending doing a little bit of Gaelic teaching for a Gaelic organisation, Clì Gàidhlig, just did not fit in with my caring work.

However, the lady there said, “In order to keep your skills up, and in case your circumstances change at any time and you are able to come back fully on to our books, we will give you a day’s work every three months teaching a one-day intensive course.” I have done that twice, and twice I have had to fill out a form, as Michelle Lloyd is aware. I could not fill out half of it, and neither could she. It asked all sorts of things that made no sense to me, and it was aimed at someone who was running a VAT-registered business that was making more than £66,000.

I was getting £100, and the system says that you can earn £100 a week and still get carer’s allowance. It also says that, to get the carer’s allowance, you must be looking after the person for 35 hours per week. Some weeks, that can be longer—as the committee will know, it depends on what needs to be done.

It is not clear whether the carer’s allowance is a taxable income for a paid job, or whether it is a benefit that is basically means tested. If I did 10 hours’ work—the system says that you can do up to 10 hours—I would take in perhaps £200 or £250. I would have thought that if I managed to do that, it would be beneficial for the benefits people because they would not have to pay me income support or pay towards my rent and council tax.

Why are we being targeted and investigated, and having our money stopped? My investigation is still on-going: I got a letter from Belfast today, and because I have been self-employed I have had to get the accountant in to check the books again. I have not done any work in that period because I could not get out, and the times that I was being offered did not fit with what I was doing.

Is the carer’s allowance supposed to be for paid employment, or is it just like any other means-tested benefit? If so, are you allowed to do 10 hours’ work? If you are allowed to work 10 hours in the job that you normally do, as it says on the one hand, that could put you over the £100 threshold. Why is that not assessed more efficiently?

I do not know enough about the benefits system to answer your question thoroughly and completely. It is my understanding that carer’s allowance is a means-tested benefit, although I may be wrong.

At the same time, however, you must do 35 hours to get it, and that is not the same for other benefits. If you did 35 hours at the minimum wage, you would get a lot more than £55 a week.

Does Michelle Lloyd have any more information or a better understanding of the situation than I do?

The allowance is taxable, so—as Roseanna knows—it is almost as if the system is treating caring as a job. The benefits system generally does not lend itself—especially if you are a carer—to doing what Roseanna is describing. Doing a little bit of work now and again is not only good for her financially, but good for her mental health and for the rest of her life, but the benefits system does not allow people to do that.

The system does not take account of whether someone is caring for one person or two people, or how many hours they are doing—it is all the same. I was caring for two people, and doing way more than 38 hours a week—it was just constant—but the system does not recognise that.

I have a general question. I was struck by what Lizzie Johnstone said about living in a house. In an ideal world, if you could have got the support that you needed on the site, is that where you would rather have been?

Yes.

So the house was almost a default position.

I could have gone down the other line, if I had not learned to read and write and started doing the poetry thing. It might not seem like a big deal to anybody else, but it was my way, rather than popping the pill. You can understand why people get depressed about other things and have to rely on medication or drink or heavy drugs. I am only talking from my own experience but I know, in my own heart, that, although I would have suffered the odd up and down—the typical parent thing—I would have had the support of my family. I have seven brothers and I have my sisters and I know that my sisters-in-law and all of them would have rallied round. If I had a hard day, I would have been able to say, “Oh God, they’re driving me mental.”

The only thing is that, with Robert’s condition—severe epilepsy—it angered me that it took such a long time to diagnose what was wrong with him. I kept repeating myself to umpteen different doctors, saying, “Look, there’s something wrong with my child.” It would have been different if he had been my first child—people could have put it down to me being naive and not knowing a lot. However, he was my last child, and I knew for a fact that there was something wrong.

I would like to clarify something, which might be helpful to the committee when we come to formulate our thoughts about this matter. I have gleaned that Lizzie Johnstone is in a house. Is Roseanna McPhee in a house?

I was in a flat.

Right.

I have been in a house several times, but I was brought up in a Nissen hut and then, in my teenage years, in a caravan beside the hut, because the council refused my father permission to build an extra room. There were nine of us in one bedroom, and that was just not going to work. Eventually, my father built a wooden shed with bunks for the boys—he just went ahead and did it. At that point, the council said that he should just provide his own caravan, which is what we slept in. After that, I was away at university and in training, so I have lived in houses. The difference was that people did not know who I was. I was quite welcome. I did not have people throwing bricks through my window.

There was a difference—

Yes. I had to not let on that I was a Traveller, so I could get employment and rent a place to live.

Just to clarify, Roseanna, are you now back on site?

I am back on site. Since I went back, I have not had a single day’s teaching from the local authority. That speaks volumes.

I just wanted to clarify that aspect, thank you.

I am on the same site, in a caravan, and there is still a sense of dislocation for carers who are on a site. Care in the community effectively boils down to care in the family unit. Outside that, there is no network or safety mechanism. You cannot afford to ring anyone if you have a problem—you do not have a land-line and, because you are not getting any work, you cannot afford to use your mobile.

So there is a physical isolation.

Yes. For years, I had to saw trees for my father for two or three hours a day, using a handsaw because we had no power saws or anything like that. If the services are not there on the site, that puts a lot of pressure on you. I was the only person who was physically able to do that job, so I was out there splitting logs in all weather—sleet, snow and so on. I now have five chalets that I have to provide logs for, and they go through a tonne in no time. As Fiona Townsley said, there is no one there to support you when you need breathing space, there are only people clamouring with their demands and dictates. Everyone relies on me—it is like a culture of dependency. It is something that you are born into and you have to assume that duty, as a family member.

On the issue of the telephone and people not having a land-line, I should say that you get no signal on your mobile half the time. Michelle Lloyd, who has been on the site, knows that, as she has tried to phone me several times but has not been able to. There are critically ill members on the site—people who are disabled and someone with an inoperable aneurism. They might need immediate medical attention, but we might not be able to get a phone message to anyone because there is no signal.

I have been raising that issue with the local authority since it built the site, although it did not build the site so much as react to the pressure that was put on it. Things were thrown on to the site and set up any old how. One of the things that happened was with Shamus’s caravan. He said at all the meetings that he wanted to live in a caravan on the site and not in a chalet. That was not acceptable, so they pulled the caravan under a huge oak tree and left it there when they left the site, and the tree fell on top of the caravan. It has been lying like a crumpled bucket since June 2010. It is still lying there. Everyone who comes on site comments on the crumpled bucket. The local authority has admitted liability, but it has never sorted it out. It has never moved it from the space that belongs to the neighbour and he cannot put a shed up.

15:45

That is the kind of facility that the council provides and we keep raising issues with it. I asked whether I could plant some trees. I used to plant trees for a nursery when I could not get Gaelic teaching, so I asked whether I could plant some trees to make it nicer where all the plants had been cut away. I asked that in May last year and I am still waiting for an answer. Five people from housing were there on the site when I asked and they were meant to be getting back to me. What is the point of engaging with people who think that people who want to live in a caravan, like Shamus, are inferior to the ones who have taken a key for a chalet, and who refuse to put in emergency services like a telephone line? If we want the telephone line, we will have to pay for a fibre optic cable to be brought up the road and that would cost thousands of pounds. It is just not going to happen.

Since the decision-making powers have fallen into the hands of the local GPs, the disabled members of the community who rely on medication have received inferior medication that has put their health at risk. For example, one of my sisters was a carer for my father for several years. She is up there in years now, and her medication was changed. They put her on statins, which she was violently opposed to, for obvious reasons, because they have a number of side effects. Since the powers have been vested in the local trust hospital and GPs, we are seeing an inferior level of treatment being meted out.

Does Jean Urquhart want to come in?

I did not ask part of my question. I want clarification about travelling and what the culture is. Do you mostly live in static sites because you have someone to care for? Are other members of your families still travelling and coming back to the site?

In an earlier evidence session, an issue came up that really shocked me—doctors would not see Travellers because they are, effectively, homeless or do not have an address. If someone lives in a caravan or a chalet on a permanent site, do they have an official address?

I have been helping someone recently who was what you would probably call homeless. He is not a Gypsy Traveller; he is a new traveller. Nonetheless, he is a human being and he had health issues. There used to be a central healthcare practice in Perth that did really good work with Gypsy Travellers, but the funding went after three years and it closed down. That practice got the man registered with the same local GP who we use. Recently, he was told that he could not go to that GP to get the strips to check his sugar levels. I do not know what the reason for that was—maybe it was because he had not been there for more than seven years so his records are not there. We are talking about someone who has sugar levels of 23. It is because he has no fixed abode. He is sitting there in a caravan, but he still has no fixed abode and does not really have a postcode. I believe that that was the reason.

I am living there in a caravan but I do not get any utility bills because I am not in receipt of any amenities or anything like that. That means that I cannot undergo Disclosure Scotland checks so that I can apply for public sector employment, and I am barred from 56 per cent of the employment in the local area.

Yes, we travel from time to time. I have been to 17 countries in Europe. It depends on what you term as travel, though. I have not been to all those countries with a caravan because the law now forbids that unless you are a Caravan Club member and have been strictly vetted.

Roseanna, you said that a health centre had been set up—a practice that was good and useful to Gypsy Travellers.

Yes, it was very good. It worked with the liaison group when the liaison group was running, but everything fell apart when the liaison group was handed over to housing and community care, because there was a clear conflict of interests. There were no more meetings after that, and we never even got a letter telling us that there was not going to be a meeting. We would phone up after four or five months to be told, “We don’t know. We’ll let you know.”

The healthcare fell apart at about the same time. I met one of the nurses who was involved in that and she said that it was a pity because they put a lot of work into it. They visited sites and people on the roadside who needed healthcare. I know that for a fact because I called them out to an expectant mother and they came out and provided the help that was needed. That service was specifically for Gypsy Travellers as part of the central healthcare programme that was organised in Perth. There was also a section that dealt with homeless people and people who could not get registered. That may still continue, but the Gypsy Traveller part fell by the wayside.

I have a romantic view of the world and thought that we had a universal healthcare service. The centre that was set up specifically—

It was within a wider centre, but the project was run—

It was a particular project.

Yes. It linked into NRCEMH as well, through the hand-held records, so there was a link at another level. It was local, practical healthcare if we needed any information and were not getting service from our doctor. I saw my doctor twice and was told that there was nothing wrong with me, but I was then seen by the doctor who saw the homeless and he told me that I had pneumonia and I got it sorted.

We have talked about Double Dykes in Perth, and Mary MacDonald is living in Oban. Is anybody living on another site?

We are in Pitlochry.

Do any other committee members have any brief questions?

I repeat a comment that I have made in relation to another issue that the committee is looking into. I understand that GP practices are commercial businesses and can decline to take people. For instance, in Inverness there is great difficulty in providing services for homeless people, so the national health service provides a dedicated doctor. Perhaps we should also pick up on that aspect.

I already know the answer to this question, but I ask it for the record because it is important. Fiona Townsley alluded to this earlier. In our previous session, the voluntary sector representatives said that if you had a site liaison officer acting on your behalf it would be easier to fast-track cases for assessment—for instance, for adaptations and other things. Do you think that that would help?

I feel that liaison officers, site managers and Gypsy Traveller liaison groups are there to act as a barrier so that we cannot get direct access to the council. I have regularly been told to go through our site manager, Bill Goodall, which is like speaking to someone on the street at times because it makes no difference. As Roseanna McPhee said, a Gypsy Traveller who was in that post would ken the circumstances and would be more committed to making changes because they would benefit themselves. I am not saying that this is true of all site managers, but for some people in the post it is only a job and they are not committed to helping or changing things.

Do you all have access to a liaison officer?

Our site manager Bill Goodall goes out and sees unauthorised encampments, so I take it that our caretaker is acting as a liaison officer at the moment. I found that out only the other day when I was speaking to him, but I have never found him to be particularly helpful.

When our site was—shall we say—upgraded after 62 years, we said, “No, we don’t want a site manager. We’ve never had one in 62 years. If we need to report anything, we’ll come out to the local office.” The one thing I will say is that they are good at coming out promptly and dealing with repairs. However, the road is very dangerous. There have nearly been three accidents. For example, my sister was going down to her work and could not turn the way she wanted because the bus was coming, but when she turned the other way, she skidded. No one puts sand or grit on the road. I have asked several times for it to be provided so we can grit the whole way down and so disabled people coming out on their steps do not fall and hurt themselves.

This has turned into a big argument. The lease with the private landlord, Sir David Butters’s family, has been in place since 1947 and is the reason why we are there. It says on the second page that the council is the tenant but the senior officer of the housing department, which led the project, handed page 6 of the lease, setting out the tenant’s responsibilities, to the roads department. It told us, “You’re the tenants. You’ve got to upgrade the road and fell the trees. If there’s a tree lying on top of a caravan, you’ve got to deal with it.” I said, “Where are my powers? I haven’t had my chainsaw training.” Basically, they are playing silly beggars, thinking that people cannot read or write. Page 2 of the lease says that the tenant in the agreement herein thereafter is Perth and Kinross Council and page 6 sets out the tenant’s responsibilities. We are the subtenants.

I know that time is pushing on, convener, but I simply suggest that site managers and liaison officers should be absolutely separate posts. There must be a conflict of interest if your site manager is acting as your liaison officer. A site manager helps to manage a site; a liaison officer listens to people’s comments and acts on their behalf with regard to what they require or what they need to be taken forward. The liaison officer should not be the same person as the site manager.

I agree. I also think that anyone from care organisations or whatever who wants to find out more has to come face to face with the Gypsy Travelling people. Even though we have endured similar issues, the Gypsy Travellers here today can only go on experience and there might be Gypsy Travellers who have not been able to come to the meeting or to speak up but who want to put across their side of the story, their experience and how they have dealt with the health board, the council or whoever on other issues. However, those organisations have to get their information directly and face to face from us and not from, say, a warden passing it to a liaison officer passing it to the council passing it to the board.

Thank you very much for that.

Re-emphasising Stuart McMillan’s point that we have to draw up a report from this, I wonder whether anyone has any specific points to make. Everything that has been said has been very important and your points have been very well made, but do you think that we need to include anything else in our report, or do you wish to raise any points that have not yet been raised before I bring in Michelle Lloyd for a final comment and draw this evidence session to a close?

How are the authorities going to get the information to the Gypsy Travellers who are in houses? How will we be able to access and get information? Will it be put on leaflets like we talked about? How will the information be put out so that we can find out where to go to access anything?

16:00

Do you mean information on the services that are available?

Yes—information on where to go if we need any help on being a carer or any other medical help, or even information about sites. I am the only member of my family who does not live in a trailer. Obviously, they are all travelling about and, as the sites only provide for so many, they are trying to get into lay-bys, sitting at the side of a wood or whatever. Do you know what I mean?

Yes.

That is another good point. When Travellers move away in the summertime—they are not allowed any holidays or anything like that—there is nowhere for them to go.

Good on-site management is needed. To have someone who is committed to Travellers and who is able to make decisions for the tenants on the caravan site—whether a Traveller or a non-Traveller—would make a big difference to me personally as they would help to get disability adaptations. That person would have experience of what it is like to live and work on a site, if new sites were to be built.

I criticised Bill, the site manager, but he is at the bottom of a long line—you ask him to do something and he has to pass that on to someone who really does not have a clue about how sites are run from day to day or what it is like living on a caravan site. All Travellers would benefit from good, strong on-site management, with the decisions made on site.

Support for carers is one of the issues that I have picked up from a couple of the witnesses. Is that an issue that should be strongly emphasised in the committee report?

Yes.

Respite care services are available for the people who are cared for, but it came across clearly that a support service is needed for the carers, whether that is to provide emotional, physical or advocacy support.

Yes. Most of the carers here today are saying that the main problem was the fight to get the help for the person they were looking after. It is the person who looks after a disabled person who does the fighting, not the disabled person, and if they had support to get the things that were needed, that would take a lot of the burden off.

Almost an advocacy service.

Yes. I do not think that we would suffer from as many health problems if that extra help for someone to come in was available.

There has always been an insistence that the Gypsy Traveller liaison officer be employed by the local authority, but what about the CAB or something else a bit more independent? If I have to double-check something to do with the local authority that I am not happy with, I can go to the CAB and get a straight answer. Indeed, the CAB has a very good outreach service in our area, which comes up twice a month to just below the site. It is difficult for disabled people to get there, but the lady has even taken that on board and has come up to the chalets a couple of times. If the CAB can do that, why can we not have an objective liaison officer working on site who can liaise with the council on the issues, rather than someone who is going to be pulled into line by the paymaster, the local authority?

I am not in favour of an on-site manager. Like Roseanna, I would prefer a liaison officer at arm’s length. We are responsible adults and we do not need to be policed 24/7. Not everyone likes the encroachment of a public figure in their face.

The other thing that we need is a cultural drop-in centre, where people who are under duress and facing the stress of caring can meet up, such as a community youth club. We are perhaps too old for a youth club, but there could be something along those lines, where people can get together. There is no provision for that. Even the Governments in the Czech Republic and Slovakia have made moves to install premises where people can meet up and participate in cultural activities. I do not see that happening here.

It would lift a lot of the burden from carers and the people who are being cared for if they had the adaptations that they need. It would certainly take a lot of the burden from my family if we had the adaptations that we need.

It is not always easy, but it is important to try to get the information out to as many people as possible. That includes carers but also the organisations involved. You can never do enough networking to ensure that people know that you are available. In my experience, it has taken a long time for us to get referrals from GP surgeries. It is about ensuring that your information goes to such organisations. GPs are in the front line, as they may well come across Gypsy Travellers who are carers. It is important that they know that someone is available. It is quite difficult to get that information out, but it is important.

A lot of learning has to be done because, over the years, there have been isolated examples of good practice that either have been short lived—we have heard many examples of that at the meeting—or have relied on one very committed individual. There is rarely strategic support for that individual from their organisation. We could share and build on a lot of what has been learned instead of constantly reinventing the wheel. I find the situation frustrating and I only work in the community. I shudder to think what it is like if you are on the receiving end of that kind of thing.

The other point about recommendations is that, as the previous inquiry in this Parliament highlighted, the issues are interrelated. It is not just about caring, it is not just about health and it is not just about accommodation. Those issues are all intertwined. As I said at the inquiry 11 years ago, there is a need for strong leadership and strategic planning at Government level because, unless that leadership is shown, the attitudes that we and community members come across, the breaches of confidentiality and the failure to recognise the culture will go on and on and will remain unchallenged.

The implementation of any recommendations that are made should be monitored. Such monitoring did not happen last time and, without that, local authorities and public bodies can get away with doing nothing.

It would seem pointless to make a recommendation and not ask for any monitoring to be carried out.

I come back to Michelle Lloyd with the question that I asked previously. Now that MECOPP’s funding is in place for the next three years, can you give us a flavour of the projects that you will develop to raise awareness or any specific projects or programmes in the Gypsy Traveller community on care?

First, there are limited resources and we are a small organisation. We will build on what we have been doing. We will also seek to influence the strategic planning of other organisations. It is neither appropriate nor right that MECOPP should be the only organisation involved, so we seek to work in partnership with others.

We would like to provide training in other areas, but we do not want it to be a tick-box exercise. We would like to provide training in a strategic way so that it can be built on and action follows from it, because all the trainers sitting round the table have probably been in situations in which somebody has come along to training but has not followed it up with any change in practice.

We would also like to become more involved in some of the developments at a national level. That might, for example, be about arguing for the principle of the portability of care, so that if someone is moving—many Gypsy Traveller families are still on the move and are still travelling regularly—the care package should follow the person and they should not have to reapply or be reassessed in each new area that they go to. Obviously, there might be developments under the new Social Care (Self-directed Support) (Scotland) Bill, but it is still quite early days and in many areas it is unclear whether the bill will benefit Gypsy Travellers.

We could do a range of things, but I stress that we would like to work in partnership with other carer organisations, so that the learning is shared and disseminated as widely as possible.

I thank Michelle Lloyd for those comments.

I thank all the witnesses. It has been a very useful evidence session. You have given us a whole load of information, which the clerks will gallantly work into a report. The session has been very informative and we appreciate the fact that you have taken the time to come along and share your experiences with us. On behalf of the committee, I thank you very much for coming. I am sure that we will see you all in Parliament again some time soon.

16:10 Meeting suspended.

16:17 On resuming—

That discussion went on a bit longer than planned, but it was appropriate to let it continue, because there was lots of good evidence from the Gypsy Travellers who were here. They were open and honest with us. I am sure that their excellent points will help us in writing our report.

Item 2 is consideration—

Sorry to interrupt, convener, but I want to ask a question before we move on. I do not know what the protocol is, so perhaps this happens routinely anyway, but it strikes me that we are once again in the realm of saying that we have heard it all before and we will feed back, so it would be helpful if we could write and thank the witnesses, perhaps through a letter from you, convener. I found it interesting and more frustrating than ever to hear about the issues that we have to tackle.

That is a good idea. We will do that.