How would you describe your beliefs and identity in terms of religion?

I am a Roman Catholic.

What made you decided to adopt or retain this tradition?

I was brought up as a Roman Catholic. My mother was a RC, my father was CofE, but within our family we had members of different religions, beliefs and no beliefs at all. So, I have always been comfortable with people of different religions and no religion at all. The reason I stayed within the Catholic Church is due to my mother. My mother’s family comes from a recusant family and we have always felt we had to fight for our faith. It is not only that. I think it probably came through my genes and the way my mother put her faith into practise. As a nurse, she very much put into practise everything which is enshrined in Catholicism. She very much put the Gospel into action.

Do you think that GB is an equal and tolerant society, especially in relation to religion and belief?

In some respects GB is an equal and tolerant society in relation to religion and belief, but in other respects it is not. In particular, on occasions I feel marginalised as a Catholic. I can remember, for example, doing some training at university to do with equality, and I remember the person from HR giving Catholics as an example, and I remember feeling very marginalised by that. There is intolerance towards some religions, and that very much depends on the way the media portray them. Technically there should be freedom to practise any religion and belief, but as a Catholic I certainly feel there are times in which I have been marginalised, especially in schools. I have a disabled son. He lacks mental capacity, he doesn’t have any speech, but he has been baptised as a Catholic and he is extremely spiritual. He really participates in services in church. I have absolutely no doubt that in his ways he is a better Catholic than I am, but when he went to his special school, we had to follow the agreed syllabus for religion, and when I asked if I could take my son out of school to go to mass on Tuesdays, I got comments from the teacher suggesting that he was skiving again… I think there are lots of hidden prejudices… which prevent us from practising freely. That is my experience. 

Are there any challenges for you in living in accordance with your faith?  And if so, are they legal, political or social in nature?

There are challenges for a Catholic. The benefits are that there are churches I can go and strictly there are no restrictions. However, there are challenges. If you have a child with a disability, for example, within a maintained school you have to follow the agreed syllabus. You do get marginalised then and you have to fight. There was no way my son could go to a Catholic school and I had to fight very hard… It would have been extremely easy to say that it didn’t matter, but I was determined to fight.  I am very glad I have done it, because many others said that gave them opportunities as well, not only Catholics, but people of other religions. Legally? I think the Equality Act has had a big impact. The different strands of equality should make it easy for us, but sometimes because of some of the beliefs that Catholics hold, I think it feels it has become a picking order within the Equality Act and there are other strands that always come first before religion, and that is extremely difficult. Politically it is very difficult to find a party in this country which is a Christian party. There are very few Christian candidates who stand. From that point of view, trying get a Member of Parliament who is going to reflect your views is extremely difficult. 

How do you regard human rights? Do you think that the Human Rights Act has been a positive development for our society?

In principle, HRs are good for British society. You couldn’t disagree with that, but in practise the law doesn’t allow this to happen at all times. If you look at issues such as deprivation of liberty, for example, I am thinking about recent judgments you have to wait for something dreadful to happen before the court deciding in favour of HRs for people who lack mental capacity for example.

There should be a human right to free medical care in principle. There are limits, partially because resources are not endless… You have to look at sustainability… and we shouldn’t be just looking at rights. We all have responsibilities as well. Again in the field of disability, there are mental health conditions, dementia, someone who is very elderly… they start getting marginalised because they can’t really shout loud… You have to think of the best interest of people. Fine if you are articulate and you know what you want and you know the way to access to services. I think the system is not robust is if you are vulnerable in any way.

An example would be for example with my disabled son, if there were a medical intervention which we wouldn’t approve of (as Catholics), if it were considered a treatment which would be regarded in my son’s best interest, there needs to be an informed decision and I would like to be well-informed on behalf of my son. I may wish to say ‘no’ to that proposal. It is very much to do with best interest and informed consent indeed.

I have the example of someone in a family, one of the siblings being severely disabled and genetic screening was offered, and another sibling of the family was told, being a girl, that if she became pregnant, she should let them know because they could provide her an abortion. Quite clearly in the case of RCs that wouldn’t be acceptable. From the point of view of the State and the health service, I think it was considered that they would be doing the lady a favour, because they were actually preventing someone from transmitting a genetic condition and they felt that the best way to do that was offering an abortion. You have two extremes there. I don’t think it is the right of the State or of the medical profession to tell a girl that she cannot have a child and must have an abortion. I think there are ways to discuss that, discussing the likelihood of having a child with a genetic condition and you must discuss it in the context of your religious beliefs and I don’t think that religion should be ever factored out on a situation like that. If those are going to be the criteria, if you might pass on that faulty gene, who many other lives will be cut short? What if someone had told Stephen Hawkins’ mother…? I think that is totally wrong and unacceptable, and I know that is the experience of someone who found this approach on the part of the health service.

Hospital chaplaincies are absolutely vital and I feel their role has been undermined over the years. Health is not only to do with physical and mental health. It also has to do with spiritual health and spiritual health is an integral part, and sometimes the most dominant part. I find that certainly in the area where I live that the Catholic hospital chaplain is no longer paid for out of the local health budget. There is only one CofE chaplain, but the Catholic chaplain is part-time, he is not funded anymore and any funds have to come from the Catholic Church. That causes enormous amount of distress. I have called upon the Catholic chaplain on several occasions, when my disabled son was born and also when my mother died… that was very important in ensuring that she had a good death and if it hadn’t been for the Catholic chaplain that would have contributed to a failure of health service. I personally don’t feel that spiritual need should be disregarded in that way and separated from the physical side. The spiritual part cannot be seen. You can chop off somebody’s arm, but strictly speaking you cannot chop off the spiritual side… although I think they can and in my view the spiritual side is absolutely vital.

The old concept of hospital was about hospitality and I think that is what should be provided now. It is a matter of common courtesy to enquire what is the religion or belief of the patient. What is going to help you to get better? I also think the concepts of modesty and dignity are very important. Why should the health service concentrate exclusively on the physical side, on many occasions to the detriment of the spiritual needs? Courtesy is essential as an element of the holistic healing process.

Do you think that living in a Parliamentary democracy is positive in terms of living in accordance with your faith?

It is hard to disagree with the idea of democracy as the best possible system. However, it depends on how that democracy is run. The idea of a benign dictatorship is alluring, but I think the advantage of a democracy is that people have a voice and this can be heard. A dictatorship is by its very nature somebody telling you what you have to do. 

Do you believe that you have a duty to vote?

I very much believe I have a duty to vote. For example, we are in Manchester where the suffragette movement took place. We should exercise our right to vote. We need to be properly informed. If we feel there is no particular party we feel happy to vote for, I still feel we should go to the polling booth and hand in an unmarked paper. That way you would be telling the potential Government what you think of them. 

Does it concern you that the House of Lords has a role in making and changing law, but is not elected?

I can see the advantage of having life peers if they fulfil their roles conscientiously and they are well-informed. If that is just passed from one generation to another generation, you cannot guarantee that the next person taking over from you is going to have the same values. Of course, hereditary peers bring their tradition with them and I don’t think that should be necessarily disregarded. If you have peers who are not elected, we run the danger of having an Upper House which doesn’t understand the electorate and don’t understand the grassroots enough, but we have distinguished peers who are certainly in touch with ordinary people. For example, Michael Barcley, because of his experience in the Arts, he is very much in touch with people. I have been in several of his events. He brings a wealth of experience, an understanding of humanity and a sense of reality to the House of Lords. 

How do you regard the presences of Church of England bishops in the House of Lords?

I am happy with bishops of the CofE in the HofL, but we should widen it to other faiths and their representatives. The invitation should be extended to broaden the HofL. I am not convinced the bishops of the CofE speak on behalf of all Christians. Some of them may be more ecumenical than others, but I wouldn’t want to see them go. 

How do you regard the devolved administrations?

Nations shouldn’t live in a vacuum. That is an important starting point. The problems start when international organisations become very bureaucratic, where the actual people of that country don’t become real anymore and the bureaucracy is what is real. The concept of best interest is very relevant again. I am wary about the extent the SNP’s interests are the best interests for everyone and the same with the European Union. It annoys me that everyday lives of people should be ruled in that kind of bureaucratic way. People should be the real focus of politics.

Politicians seem to refer to health and these matters when it comes to election time, but in between times… I get very involved in the voluntary sector, with activities for people with learning disabilities and additional needs. One of the things we ask for is a set of activities where these citizens can get exercise and activities which are affordable and conducive to their well-being. However, when you try to get funding, youth workers who understand value for money… it is very difficult to get that funding and the social impact of those restrictions will be massive. Small charities struggled after the Olympic Games because all their funding seemed to disappear. I think politicians don’t understand that the day to day support makes a difference. The State and health system should deal much more with the concept of prevention, and I think there should be education about our duties as citizens to keep ourselves fit. We need to make sure that our well-being is optimum. We should not just be using the health service as an endless pot. We need to make sure that we do our best too.

What are the most appropriate mechanisms for holding people with power to account?

All of them have a part to play, but I think what is really important is that voices which are not heard very often (people like my disabled son) are properly heard. It seems to me that only some voices are heard in our society. So, pressure groups can be extremely effective, but they only speak on one subject. It is a challenge how to hear those voices. I think actually one has to get out of his way to listen to those voices. Those people are unlikely to go to polling stations, their MPs won’t take the time and trouble to listen to them because they don’t feel there is a big enough share of the vote there. Politicians will go where they think there are more votes involved. It is a tactical game, isn’t it? The same with legislation… There are so many laws which are supposed to help us, but if you cannot get legal aid or you don’t know how the legal system works, you are going to become immediately disempowered. All mechanisms of accountability are very valid, but not everyone is going to take advantage of those systems.

There are massive failures when it comes to accountability in the NHS service and the lessons never seem to be learnt. What happened in Staffordshire and the Francis Report which came out… pointing out that patients, families and friends were not being listened to… so many reports about families of individuals with disabilities not being listened to… also the unnecessary death of people with learning disabilities… and when you look at it… nobody is held accountable… when there are failures the Chief Offices are sent somewhere else, that is all. It is then exactly the same. There seems to be a glass ceiling, for example, at basic level when you go to hospital, you are asked to do the family and friends’ test. I went with someone who is suffering from terminal cancer to the day ward, and had to have her chemotherapy done. She went through the procedure, came to the ward with terrible pain and I kept saying I had to do something for my friend. Nobody took very much notice in the beginning. Finally something was done and she started to feel a little bit better.  She had the family and friends’ form in front of her. She was asked the question about whether she would recommend that unit to family and friends and she said to me ‘please tick the yes box, because I have to come back again’. She did that… What accountability can we find there? She couldn’t complain because she wasn’t in a position to complain and she was too ill. And then it escalates all the way up to the top, when you find all those deaths… And then the situation with whistleblowers… Anyone who blows the whistle gets in fact penalised. I think the accountability issue is appalling. 

Do you think that those in public life are representative of society as a whole?  If not, is there anything which can or should be done about this?

What we need in our society is caring and compassionate MPs and a proper understanding of what we need as human beings and to fight on our behalf. In the past we have been dominated by upper class men, but I don’t think it is doing anyone a favour when we set up quotas. I think you need the right people. If you do, they will be good representatives, but if you don’t have the right education, there will be barriers for many people. We must try to take away those barriers. 

Have you ever felt so strongly about a political situation that you have wanted to campaign to change it?  If so, what did you do?

There are many ways in which I have tried to challenge decisions and make my voice heard. I have written to my MP, for example, on behalf of my disabled son. I try to go through the obvious routes first and I follow the protocols. Yes, I have written to my MP. I haven’t demonstrated, but I have crossed the picket line when I didn’t agree with it. I have also written letters to papers, always being backed up by evidence. I believe in keeping up to date with what happens in the world of social care.

Are my needs as a Catholic sufficiently catered for? I have given you examples in the field of schools. From an education point of view, there have been problems and my Catholic views have not necessarily been taken into consideration. As far as the police are concerned, I think it is very much a training issue. I don’t like when the name of God is taken in vain. I admit I am sensitive about that. I have seen improvement when there is proper training, but you have to go out of your way. There is very often a lack of understanding about the needs of Catholics. In relation to hospitals, I have found them at times very insensitive and at times very anti-Catholic. ‘Are you one of them?’ I have been asked a few times. It is that kind of approach… You have to justify for being Catholic when you are feeling unwell… that is the worst time to be challenged. The concept of healing must incorporate everything and the spiritual side shouldn’t be excluded.

Is it important to you always to act within secular law?

By and large, I am a very law-abiding citizen. I think if I had to break any law, I think it would be to defend someone who is defenceless and need someone who supports him. For example, with regard to health and safety, I think you should necessarily go through the protocol if you are going to deal with users who lack mental capacity. If I saw someone who needed to be restrained, but doing so were unlawful, I wouldn’t worry about the legal consequences.  It is much more important if you can save someone’s life. I would get into big trouble for doing so but I would still do it. 

Do you think that the Rule of Law is applied equally to all members of society?

All of us should be on an equal footing. Speaking as a mother of a son with learning disabilities, I know there are people with learning disabilities who find getting justice harder because they are not articulate. On many occasions the other party is much more powerful. Think for example of what happened with Jimmy Saville. His victims were powerless at times. If you are powerful in this society, you are more likely to get justice. The poorer you are, the less articulate you are… depending on your race and what part of the country you come from… you may find it more difficult to have access to advocate services for example. You may not be sufficiently well educated to realise you have some particular rights indeed. So, I think although there are endeavours to make sure that everyone is on an equal footing, it doesn’t always happen. The legal aid issue… there are people who are crying out for justice… look at issues such as deprivation of liberty and yet, it is money at the end of the day. 

How do you regard the gradual increase in police powers over the past 15 years or so?

Powers of the police? It is a difficult balance to strike. If there is going to be a threat against life, I feel we have responsibility to do something. However, the powers provided to the police must be carefully monitored then… but if you haven’t done anything wrong, why would you fear it? I am not afraid of the police coming to my house… Everything has to be reasonable and proportionate. Those powers have been brought for the right reason, but they must be carried on for the right reason too. So, the powers of the police must be monitored. 

Are there any legal rules which you currently find restrictive?

I can’t think of any particular examples of laws which are restrictive of my freedom as a Roman Catholic. I can only think of the laws on education. If you cannot have your child in a Catholic school then you have to abide by a syllabus which I would regard as restrictive, but that has to do with education law.

Is there anything you would like to add?

There is something which I have thought about before this interview was ever suggested. I am a Christian, I am an unpaid carer, I have a son with learning disabilities, I work in the voluntary system on an unpaid basis, I interact with the statutory sector as well. It is interesting that the values which I hold dear as a Christian… love your neighbour as you love yourself, common good, the ten Commandments, care, healing, looking beyond myself as an individual… they all values that spring from my Christianity, and are values that the voluntary and the public sector also share. However, as I am a Catholic, there is an imperative to discount those qualities… sadly because I am a Catholic they have less value. I find it very strange that I am just defined for being a Catholic, when those values drive me to do what I do in the voluntary sector, to give a voice to people who otherwise would not be heard. The Gospel is full of challenges, isn’t it? The Gospel is very radical and that drives me on. That resilience also comes from my Catholicism. I don’t give up easily. I just find that there is so much political correctness that as soon as I identify myself as a Catholic, there are some problems. I find it very strange that the values which I get from my faith are extremely valued by the voluntary and the public sector, but from the minute I say they come from my Catholicism, then we go back to the ‘oh, you are one of those’. I have been told very explicitly and very recently that I am ‘one of those’. I think this is due to the assumption that Catholics for example don’t like gay people. It is a misunderstanding. There is nothing in our faith which says we don’t like gay people. There are certain beliefs we follow, but the overriding principle is that we love our neighbours as we love ourselves. There is this view that we hold extreme views which make us bad people.

 

Anne is a nurse by profession but was unable to return to her career due to caring for her son who has complex health and care needs.  She is currently Chair of Trustees of a local charity that supports children with disabilities and their families, an Associate Lecturer at the University of Worcester in the Institute of Health and Society, and a co-opted Board member of Healthwatch Worcestershire.  None of this would be possible without the inspirational support of her husband, daughter and son.

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