Residential Care (Severely Learning-disabled People) (PE1545)
Agenda item 2 is consideration of three new petitions. The committee previously agreed to hear from the petitioners on all three.
PE1545 by Ann Maxwell on behalf of the Muir Maxwell Trust is on residential care provision for the severely learning disabled. Members have a note by the clerk, a Scottish Parliament information centre briefing paper and the petition.
I welcome Ann Maxwell to the meeting and ask her to set out the context of her petition and what she is looking for, after which we will move to questions.
Thank you, gentlemen, for giving me the opportunity to speak to you this morning.
I ask the committee to walk with me in my shoes for a moment. I am the mother of Muir, who has a severe form of epilepsy called Dravet syndrome. Muir had his first seizure when he was just four months old and, as we rushed him in to hospital, we did not know that the legacy of the seizures that would follow would leave him profoundly brain damaged and would dramatically alter the course of not just his life but the life of his family for ever.
My husband and I are now Muir’s legal guardians. For more than 18 years, we have been his voice. He cannot read, he cannot write and he can barely colour in between the lines. He will never work or marry or have children of his own. He requires care 24/7, including all aspects of personal care. However, he is a speaking child and he has an amazing personality and sense of humour. His behaviours are at times challenging, but there is still much to celebrate.
Muir has been a pupil at Donaldson’s college since he was five years old. At his most challenging, around the age of 12, we fought for him to become resident at Donaldson’s lodge. Since that day, Muir has positively thrived, with lots of friends and a very fulfilled life, but now that he is 18, what the future holds for him is extremely uncertain.
Along with my husband, I am co-founder of the Muir Maxwell Trust, a charity established 12 years ago in Muir’s name to support children like Muir throughout the United Kingdom, as well as their families, who are struggling to cope. Epilepsy, in all its forms, is just one condition, but the Scottish Government’s policy review identifies that 66 per cent of people with profound and multiple learning disabilities have epilepsy. Therefore, without doubt, the Muir Maxwell Trust represents the most needy group among the learning disabled.
It is glaringly obvious from our research that the Scottish Government, by its own admission, lacks factual data on people with learning disabilities, especially those with profound disabilities and who may require residential care as an option. We should remember that they have no voice. The Government relies on data that is provided by local authorities and social work services, which often comes through charities such as the Scottish Consortium for Learning Disability. I know from first-hand experience that both are failing to properly assess the needs of the group, because of their lack of understanding of profound disabilities and their lack of proper application of the assessment process. Senior members of my council have admitted to those failings. The group’s needs are therefore not being recognised, understood or met.
That includes the desperate need for sophisticated long-term residential care, by which I do not mean long-stay hospitals as we had in the past—nobody wants those. I have fought a relentless battle for our son to receive the very best of care, including residential care, and it has worked for him. It would work for many others, too, but sadly other families have not won their battles as I have and their children have been denied the same care. That will all come to an end shortly for Muir because, at great cost to his local authority, he will be in an out-of-area—in fact, out-of-country—placement. There is nothing appropriate by way of sophisticated residential care in Scotland for young people such as Muir, and that must be urgently addressed.
Recommendations 51 and 52 of the Scottish Government’s review of services, “The keys to life—Improving quality of life for people with learning disabilities”, suggest that changes are in progress, but we fear that the review will fail to recognise—and, importantly, find—the substantial funding that is required to meet those needs, in particular for residential care. We fear that the homecoming of our learning disabled from out-of-country placements that the Scottish Government plans for June 2018 will amount to no more than saying, “Sorry, please adapt to fit to what we have to offer, because we cannot meet the need.” That will then become unmet need.
The Mansell report says that early intervention and
“sophisticated long-term arrangements for management, treatment and support”
will prevent problems from arising in the first place. In the absence of long-term arrangements such as residential care, the cost to Government will be high, as needs fail to be met and families therefore fall apart.
Only proper assessment of need will lead to recognition and understanding of this most severe and complex group, which will then lead to service delivery in the essential form of sophisticated long-term residential care, which does not yet exist in Scotland, other than in much underused and remote areas of child services such as Donaldson’s college.
I urge the Scottish Government to support schools such as Donaldson’s with significant public sector investment and to encourage local authority placements for children and young people at the school and in residence, and then to go one step further and replicate the service in adult services, in partnership with organisations such as Donaldson’s, which are already delivering. In turn, they will be the feeder for the long-term residential care, with respite for those families who desperately need it.
Thank you, Ann. Do members have any questions?
Thank you, Mrs Maxwell, for that powerful presentation outlining the case for your petition.
You referred to your local authority. Can you expand on the support that you have—or have not—had from your local authority to deal with your son’s condition?
That dates back probably more than a decade. Initially, we received no support from social services. After that, we received poor support from social services. We have had engagement from educational psychology, which has always been good. However, in pursuing support for my son Muir, I sought something called a section 23 assessment, which is made under section 23 of the Children (Scotland) Act 1995. It took me 18 months to have that assessment carried out—it really was passed from pillar to post. In the end, I asked a student who was working for the charity Epilepsy Scotland to help me with that report. It was then passed from pillar to post within the council. It is interesting to note that it was the same person, who chaired a number of committees, who was passing it from pillar to post. Eventually, through 18 months of fighting, we got the support that we needed to have a residential placement within Donaldson’s college.
The social worker then had a statutory obligation to review Muir regularly, but she was not doing that. I had deep concerns, knowing that the future would require an on-going fight and that, if there was nothing on record to evidence his needs, the fight would become harder. Therefore, we approached the council and asked it to find us another social worker, which it did. We are told that we now have the best social worker that it has in children’s disability services.
The looked-after child review meetings have been poor in their quality and administration. Very often, nobody has been given the notice that they need to prepare for those meetings and submit reports, and the paperwork often does not arrive on time. The meetings are poor at the level of basic administration, never mind the time that is required to understand the complex and profound needs of my son. That warranted meetings at a senior level in the council at which officials literally held their hands up and said that I was right about all the issues and that I needed their help to correct them. Within social services, there is a fundamental problem with understanding the complex needs of children with disabilities.
Thank you. I have a couple more questions arising from that.
In your opening comments, you referred to 2018 and used the phrase “out-of-country care”. Would you care to expand on that?
We have spent considerable time looking around our local area and around Scotland for long-term care for our son Muir once he reaches the age of 19—he will not leave school until he is 19. We have investigated everything with social services, and the conclusion is that there is nothing that can support his needs in Scotland. However, he is likely to get a placement at Young Epilepsy in Lingfield, Surrey.
I assume that that will mean uprooting the family.
No, because I have two other children and it is really not appropriate to do that. What it will do is put enormous distance between ourselves and Muir.
The facility is fantastic—it is exactly what he needs. However, he has been at Donaldson’s since he was five years old and he has had the same peer group and carers throughout. Therefore, for him, as someone who is very fragile emotionally—and he is just an example of many—the change is devastating. Furthermore, the placement is for three to five years only; after that, we will have to find somewhere else.
10:45
You indicated that you have been fortunate. You have fought hard to get the services that you have received. Despite that, you have had to continue to fight to ensure that the services were being delivered consistently. You gave examples of assessments and reviews by social work staff and you have been told that you have the best social worker on the case. How would you want your petition to be widened out to ensure that parents of other children who have the same condition are supported? You have, I hope, resolved all the issues in your local authority area, but I am sure that, as you have indicated, there are parents throughout Scotland who may be facing similar if not the same problems in getting the social work department and the local authority to sit up and take notice of their child’s condition.
Without wanting to sound arrogant, I am unique, in as much as I have fought a hard and furious battle for my son. I have also anticipated the future throughout the journey, which has enabled me to consider what might be required ahead. A lot of parents do not do that; a lot of parents live day to day and are still living with the hope that, somewhere in the course of their journey, there will be a cure. Therefore, the forward thinking by parents is not there. To some extent, I regard myself as their voice.
There are parents who are fighting with their social worker and their social work department on a daily basis in the same way that I did with mine. They do that with the support of the schools that they would like their children to attend—the schools will attend meetings, for example.
At the end of the day, even with the support of a social worker, you must still convince the local authority behind that social worker to fund the request. There are times when it is difficult to know whether the social worker is representing the local authority or the child and the family. That black hole often results in a negative decision.
First of all, a cultural change is required, so that social workers clearly recognise that they are responsible for the family. That is about identifying need. Meeting the needs has an associated cost, but that is not the concern of the social worker. It might be the concern of the local authority, but there needs to be a definite loyalty on behalf of social workers to the families.
Additionally, we must broaden our horizons. Local authorities must be much more supportive of schools such as Donaldson’s and the blind school. There are not many of them—very few facilities operate at the high end that I am talking about, particularly where residential care is concerned. Fundamentally, the schools are not being supported by local authorities in honouring the funding packages. If we could get that support, that would be the best way of supporting the families.
Thank you very much.
Mrs Maxwell, you said that you had a concern about the lack of data held by the Scottish Government. Some of the data that we have seen suggests that the demand for residential care is on the decrease, because of independent living. Could you expand on your concerns?
First of all, we must be clear that there is no clear definition of “residential care”. The phrase is used a lot; it conjures up images of the long-stay hospitals of the past, which no one wants, and images of—shall we say—care homes, of which we have a number in the community. However, what we do not have, certainly in adult services, is residential care similar to that which supports a school. The example that I use is Donaldson’s and the residential lodge that is attached to the school. That is unique residential care.
A decline in interest in residential care is inevitable. Historically, there were many people in long-stay hospitals. That had to come to an end, and I fully support the strategy that was recommended in 2000. There is no doubt that a lot of those patients, including people with learning disabilities, have been and will continue to be well supported in the community.
I am talking about the very small number of profoundly learning-disabled people who are not capable of living independently in the community and whose needs are greater than those that a traditional care home can support. Those needs can be so profound that 24/7 care is required, and such care must engage fully with the person to avoid all the problems that might otherwise arise if they were to become unmanageable behaviourally, health-wise or otherwise.
The statistics are wrong, because they are obtained from local authorities and social services. I know from first-hand experience of the way in which those bodies have gathered our information that the information that they feed back to the Scottish Government via charities and so on is incorrect. They do not understand the disabilities. In fact, when I met representatives from my local authority, they said, “We need someone like you to speak to social workers and educate them about these profound disabilities and how difficult they are to manage in order to help them identify them.”
The data is not coming to the Government from the ground up. The people who know the children best are the families, and the information and assessment process is not happening on the front line to give the Scottish Government the proper information.
You said in response to John Wilson that dealing with social workers has sometimes been a bit of a fight. Is that because of a lack of understanding among social workers?
Social workers are failing to identify the small group of profoundly learning-disabled children who are distinct from those who are learning disabled. That group is a small minority, but their disabilities are severe and complex and social workers do not, in the main, understand their needs. Because of their lack of understanding, they do not recognise the need to apply the assessment process rigorously in order to get a grasp of the needs.
Have you ever been in touch with any other organisation about your petition? I am thinking in particular of SCLD.
I have been campaigning on various issues on behalf of the Muir Maxwell Trust for some time now. I know that SCLD campaigns as well, but it does not campaign for the same group of people. We represent a very small group of people who are profoundly learning disabled, whereas SCLD tends to represents the majority of learning disabled people as distinct from that small group. I have always felt that, if we were to become part of that coalition, there would be a risk that our voice on behalf of those who are profoundly learning disabled would be diminished. I am aware of what SCLD is doing, and I think that it is aware of what I am doing, but we do not campaign together.
As there are no further questions, I invite the committee to consider what action it wishes to take in relation to the petition.
I think that we should write to the Scottish Government to ask for its position. There is clearly a gap here. I know from dealing with a constituent’s issue, which did not involve the same disability from which Mrs Maxwell’s son is suffering, that there is a lack of facilities for young adults who leave the care provision that is available for children. Tragically, people are on occasion dealt with in adult mental health facilities when they are clearly not suffering from a mental health impediment. To some extent, the wrong thing is done for the right reasons. Those people should not be in mental health institutions in the city of Edinburgh, but I can understand the pressures on a council at a time when care in the community accounts for a quarter of a million people.
Something has to be done. I understand that there are restrictions and limitations in a smaller jurisdiction and, as I have noticed in dealing with specialist criminal justice matters, many institutions go south, because apparently we do not have the numbers here. However, I am not necessarily convinced that there is not a need here and that we do not have the numbers. The Scottish Government will be the organisation with a general overview of the situation in which young people like Muir Maxwell and my own constituent leave care facilities for children to go into the big wide world and are not provided for.
I suggest that, given that this is a new petition and that we are already writing to the Scottish Government, we could also write to the Learning Disability Alliance Scotland, SCLD and Scotland Excel to seek their views.
We could also ask whether the Scottish Government collects data on the number of young adults or adults who have profound learning needs and would benefit from residential care.
I am concerned that, as Mrs Maxwell has outlined, the only residential care that might be available for Muir Maxwell is in Surrey. I would like to understand whether the Scottish Government has assessed the need for provision in Scotland to give parents that option. After all, moving someone to Surrey would break family links. If we can get accurate figures from the local authorities and health boards on the number of young adults and adults who have profound learning needs, a case might be made for delivering in Scotland a service for those individuals that is similar to the service offered by Donaldson’s lodge or the Donaldson’s school, so that a person can keep their family links instead of completely losing their relationship with not only their family but potentially their wider family. Some of those young adults and adults have not only close family but, as Mrs Maxwell has indicated, peer group support, and it is frightening to think that they could be completely separated from the links that have been created in their lives.
I know that we are proposing to write to an extensive list of people, but Mrs Maxwell also mentioned social workers. Perhaps we could write to Alan Baird, the chief social work adviser, because it seems that some of the issues might relate to training and the level of understanding among undoubtedly hard-pressed social workers.
Epilepsy is a very specialist condition. I remember having to go through the same process with the police, as people’s perceptions of epilepsy are usually about someone having a fit in a room. They do not realise that the condition manifests in a variety of ways. Some understanding of what the chief social work adviser expects and whether he thinks that any improvement in training is needed might be helpful.
Does the committee agree to action the points that have been raised?
Members indicated agreement.
I thank you for your attendance, Mrs Maxwell—it is much appreciated. I suspend the meeting for a couple of minutes.
10:58 Meeting suspended.Adultery (Definition) (PE1536)
The next new petition is PE1536, by Akri Jones, on the definition of adultery. Members have the petition, a note by the clerk, the SPICe briefing and a submission from the Free Church of Scotland. I welcome to the meeting the petitioner, Akri Jones, and invite her to speak to her petition for about five minutes. We will then move to questions.
Thank you for giving me the opportunity to speak about my petition. Through my petition, I seek an amendment to the definition of adultery so that it also applies to spouses who have been unfaithful through involvement in same-sex extramarital relationships. My intention is not to have the adultery laws abolished.
I am a Christian and I am proud to call myself a Christian. I recognise the importance of safeguarding the adultery laws for people such as me, who follow a faith, and for non-religious people who value the principle of faithfulness in a marriage and see adultery as wrong.
As the definition of adultery stands under current law, it is discriminatory, as one section of society is treated differently from another. That makes the law unequal. The marriage legislation should treat people equally. The use of “unreasonable behaviour” as an alternative ground does not quite address the issue, which is that marriage equality should mean equality in all respects, and that fundamental principle should not be violated. Furthermore, unreasonable behaviour can be defined widely. It does not apply only to infidelity but has been used as the common ground for divorce in UK divorce law because of incidents of antisocial behaviour, domestic violence, substance misuse et cetera.
The right to equality is a basic human right that the Government has a duty to protect, respect and fulfil. It is enshrined in law and respected in practice, in all aspects. As the definition of adultery stands, it is in direct breach of legislation. For example, article 1 of the Universal Declaration of Human Rights states:
“All human beings are born free and equal in dignity and rights.”
Article 5 of protocol 7 to the Convention for the Protection of Human Rights and Fundamental Freedoms, which promotes equality between spouses, states:
“Spouses shall enjoy equality of rights ... during marriage and in the event of its dissolution.”
The Human Rights Act 1998 safeguards existing human rights and places a duty on the Government, the courts and other public bodies to respect them.
The definition is also in breach of the Equality Act 2010. It is an example of direct discrimination under section 13(1), as it treats one person less favourably; it is a form of victimisation under section 27(5), as it involves
“committing a breach of an equality clause or rule”;
and it is a form of indirect discrimination under section 19, as it places one person at a disadvantage.
As I stated, my intention is not to have the adultery laws abolished. We live in a world where morals are on the decline and a world that has become a bitter place, with more social problems, more division and more hostility. We are living in a world that needs to safeguard our morals more than ever. Marriage is one of the most important institutions in our society. Faithfulness is an essential part of marriage and the adultery laws uphold that belief.
The law, our morals and social and spiritual behaviours are steeped in biblical principles—do not steal, do not commit adultery, love one another, be a good Samaritan et cetera. Adultery is not just a personal offence against the injured spouse; it is an offence against morality laws that has enormous consequences for the rest of society. It is a clear violation of the contractual obligation between those in a married couple.
In the UK, we treat adultery as a civil and personal matter. We seem to forget that, in many parts of the world—such as Saudi Arabia, the Philippines, North Korea, Taiwan, Pakistan and 26 states of the United States of America—adultery remains an offence in law and is punishable by fines and imprisonment.
This Parliament needs to leave as a legacy to future generations a “powerful moral compass” that informs us of what is and is not acceptable and a “set of values” that treats everyone equally and recognises and protects basic human rights. We need to leave this world a better place than we found it. Moral fibres bind the nation together, and removing the adultery laws would affect our society’s moral fibres, contribute to the decline of morals, create more social problems and leave a legacy to future generations that unfaithfulness is acceptable. It would devalue the importance of faithfulness within a marriage and send out the message that adultery does not matter and does not harm the injured party. That might lead to an increase in divorce rates, which would place further pressure on existing services, and divorce law would eventually slide towards a fully no-fault system.
Parliament cannot remove the adultery laws without breaching other legislation. For example, under the Equality Act 2010, religion, its characteristics and beliefs are protected for people who follow a faith, and removing the adultery laws would breach that law. In fact, such removal would be a form of discrimination against those who follow the fundamental principle that marriage is based on exclusive sexual fidelity.
Religion decrees that, when unfaithfulness is cited, the ground of adultery needs to be used to petition for divorce, regardless of gender status. A sexual relationship, whether it be heterosexual or homosexual, is an equivalent betrayal to the injured spouse, causes deep distress to the betrayed partner and, as has been seen, rips the fabric of society as it tears marriages and families apart. It is important for an individual to be able to dissolve a marriage in a manner that does not compromise their faith and integrity. If people have the right to marry how they choose, they should also be able to choose how to divorce.
It is within the scope of the Parliament’s powers to change the definition of adultery without removing the adultery laws. In the UK, adultery is defined as “voluntary sexual intercourse with a member of the opposite sex who is not the person’s spouse”; in the USA, it is defined as “voluntary sexual relations between an individual who is married and someone who is not the individual’s spouse”; and the Bible defines it as “consensual sexual union”. As we can see, many terminologies are available to the Parliament in redefining adultery.
Scotland is a nation wealthy in culture, history, natural beauty, creativity, forward thinkers and leaders in academia, science, research and politics. It has produced Prime Ministers and so on. Let us not become a nation poor in morals. Removing the adultery laws would divide a nation on moral grounds. Mark, chapter 3, verse 24 puts it well when it says:
“if a kingdom be divided against itself, that kingdom cannot stand.”
Thank you, Ms Jones. Do members have any questions?
Ms Jones, you asked on several occasions in your statement for the current adultery legislation not to be removed, but your petition is fairly straightforward and consists of one sentence asking for the adultery laws to apply to all forms of marriage. Are you concerned that pressing forward with the petition would mean that the legislation would be changed to take adultery out of the legislative framework?
I am very concerned about the issue. Since last October, I have been reading in the papers of concerns that, if my petition goes through, the adultery laws will be abolished. That is not the intention behind my petition—I am simply seeking a change in the definition of adultery—and I highlight the importance of the consequences of removing the adultery laws. The Parliament has the option of redefining adultery without removing the adultery laws.
I am just wondering where your concern comes from. You are concerned that an unintended consequence of your petition would be that the current adultery legislation was dropped. The Scottish Government or other agencies might decide that this is the time to review the adultery legislation and either widen the definition or, as you have pointed out, decide that the legislation is antiquated and no longer fit for the 21st century.
I have also raised my concerns after reading the SPICe briefing and seeing the recommendation about abolishing the adultery laws. That was the other reason why I felt it important to highlight the matter; I did not want to cause any confusion about what I am trying to achieve with my petition.
If there are no more questions, I ask the committee to discuss the action that it is prepared to take on the petition.
I think that we should close the petition. The petitioner has made her point, although I do not necessarily agree with her. I tend to take the position that the concept of adultery is past its time and that divorce should be on the basis of irretrievable breakdown.
In any case, the Government clearly has no plans to do anything about this. We have had the programme for government; we are now in the spring of 2015; and the Government is not going to legislate on this or any other such matter between now and the end of the parliamentary session in 2016. It would be up to an incoming Administration, whatever that might be, to decide its priorities.
Ultimately, this is more a matter for the Scottish Law Commission, and I know informally that, after recent discussions, it has no plans to do anything about the subject. Those discussions have recently taken place; the Government has no plans to deal with the issue; there is nothing on the legislative timetable; and the timescales are against us. It will be for future Administrations—or the Scottish Law Commission—after 2016 to consider the matter, if it is decided that there should be a review of divorce law or, as is more likely, wider family law.
Do members agree with the action point suggested by Kenny MacAskill?
Yes, but we need to let the petitioner know that, even if we decide to close the petition today, she has the right to bring it back after a year.
Okay. Do we agree the action point?
Members indicated agreement.
I thank Ms Jones for attending the meeting.
11:12 Meeting suspended.Cancer Treatment (PE1552)
The third new petition is PE1552, by Peter Campbell, on choice of treatment for cancer patients. Members have a note by the clerk and a SPICe briefing as well as the petition. I welcome Peter Campbell and Peter Adams to the meeting. I invite Mr Campbell to speak to his petition for around five minutes, after which we will move to questions.
I understand that the two of you wish to share your presentation. It is over to you first, Mr Campbell.
I am a deaf person, a war pensioner and a former member of the 51st Highland division. I sustained an injury while I was in the Argylls, so I would like you all to speak up—shout at me—so that I can hear. I would be grateful for that. In fact, I am always getting shouted at—the sergeant major said that.
I have come here having watched my family die in front of me. No parent should ever witness what I have witnessed, especially as far as my daughter Barbara is concerned. I will read a short statement.
Barbara worked in a hospice for eight years, so she knew all about cancer. I will never forget the day that Barbara came in with my daughter-in-law and they sat down. I knew there was something coming. I said, “What’s wrong with you, Barbara?” She said, “Dad, look, I’ve got a wee lump in my breast.” I said, “Well, you’re a nurse, Barbara. You will deal with that. You work in a hospice and you know what cancer’s all about, darling, don’t you?” She took off. That was in 2006. By 2010, I was to witness my daughter being butchered— that is the only word that I can use for it. She had one breast taken off, and then the next breast came off. In 2010, I just had to stomach it. I thought, “God, I’m a war pensioner but I’ve never seen so much cruelty in all my life,” and it was the health service that was doing it. I could not take it all in—I just knew it was not right. Time went on, and Barbara succumbed to death. That is my statement.
When I think about it now, I feel so angry knowing that what was happening was legal mass murder—in my eyes, anyway. Barbara and I surfed the net and we found all sorts of communications from people who are helping to cure cancer through other means—for example, through electric medicine. I have brought an example of that with me today. The machine costs £4,000 and is called a Photon Genie, and I am on it every day. My wife has Alzheimer’s, and she is on it every night and is responding, treating her dementia with this electric medicine.
That and other good things are all coming to me. I am a reborn Christian, and I was cured of cancer in Medugorje in 1994.
Thank you for your part of the presentation, Mr Campbell. Let us now move to Mr Adams.
Thank you for allowing me to speak in support of Peter Campbell’s petition. We believe that, since the passing of the Cancer Act 1939, cancer sufferers have been failed by the British medical system, which offers only the three-pronged treatments of chemotherapy, radiation and surgery. I believe that it was Albert Einstein who said that the definition of madness is
“doing the same thing over and over again and expecting different results.”
I suggest that this madness is evident in our cancer treatments. In fact, a report that came out recently said that breast cancer patients who reject all conventional treatments survive four times longer than women who follow the system.
Cancer statistics show that, in the UK and especially in Scotland, we have among the lowest survival rates in the European Union. One of the countries far above us is Germany, where the system allows cancer patients to use other forms of treatment if the first round of conventional treatment does not work. Here, if patients ask about or suggest other treatments, some of them are belittled and threatened with ostracism and not getting any further treatment.
Outside Europe, there is a beacon of light at Dr Contreras’s Oasis of Hope clinic in Mexico. The survival rate there is, on average, double the survival rate at the five-year point in our cancer units, yet the majority of patients attending that clinic present with stage 4 cancer having already gone through conventional treatment and having been told, “We can do nothing further for you.” The question is, how come Dr Contreras’s patients have a much better survival rate than ours here in Scotland? Would it not be a good idea to find out why?
A large number of treatments, including the protocol that Peter has mentioned, are used in various parts of the world and are successfully treating patients. They include intravenous vitamin C, laetrile, Essiac, ozone therapy and immunotherapy, to name but a few. Because they use products that cannot be patented, there is no incentive for the pharmaceutical industry to produce them or for anyone to spend money on testing them against the so-called gold standard. Therefore, they will never be accepted or even trialled because of the restrictions in our health system under the Cancer Act 1939.
With our devolved health system here in Scotland, we have the opportunity to look outside the conventional cancer treatment box and to encourage treatment that is already used in other parts of the world for the benefit of our citizens. That would not only result in better outcomes for the patient; it would also reduce the costs to the health budget—we all know how much we are struggling with ever-increasing numbers and costs.
There is a whole world of information out there. Please be open minded and find out more about what is working across the world instead of paying for the ever-increasing and exorbitantly expensive magic bullets that are promised by some research labs and pharmaceutical companies. If we do not take steps to incorporate successful treatments that are already available to others, we will continue having to fund the ever-increasing costs of cancer treatments, which we all know this country cannot afford.
Thank you. I invite questions from members.
Mr Adams, did you at any time pass the information that you have just provided to the committee to the Scottish Government and the Scottish task force for their attention?
I have passed on the information previously. The first time, I passed it to Nicola Sturgeon at a conference up in Stirling when she was the health minister. There have been a couple of other times when I have passed on similar information. Also, for a number of years, I was part of a pilot project with the Fife NHS board. I was one of the elected health board members and I raised the issue a couple of times within its system. One time, for our board’s information, we had the cancer people in and we were allowed to have a question-and-answer session with them, but when I asked questions I was given the treatment that I just mentioned. They look down their noses and attempt to belittle you because what you suggest is not within the standardised treatment.
I tried to approach Nicola Sturgeon when my daughter was alive, to tell her that my daughter was going through a terrible time. I did not get to see Nicola Sturgeon but I gave all the information to her secretary. That was about two years after my daughter was diagnosed. I was shouting, “Wolf!” to everybody in Scotland about what was happening, but it was going in one ear and out the other.
What position do the cancer charities such as Cancer Research UK, Macmillan Cancer Support and the Breast Cancer Campaign take on the issue?
The cancer charity that I am involved in is CANCERactive. It is now one of the best holistic cancer charities out there. I have brought a copy of its icon—integrative cancer and oncology news—magazine along. I will leave the magazine with you so that people can have a look through it.
In my opinion, Cancer Research UK is part of the problem because it is too tied in with the pharmaceutical companies and, in a lot of ways, it is subsidising the shareholders of those companies by putting a lot of money into research, which the pharmaceutical companies should be doing.
The pharmaceutical companies think that they can walk on water, but it is time that they were confronted. That is what it is all about for them—it is all about money.
We are here to talk about alternative treatments, Mr Campbell; we are not here to disparage some of the companies. Can you keep to your line?
Are there any other questions from members?
You have referred to what you say is working abroad. What research have you done on that? Is there any research that you can point us towards?
I do not have the details here, but there is a lot of research. In the icon magazine there is a section about current research—both conventional and non-conventional—around the world. It has references to the different research that is going on. I am not one of those people who can keep things in their heads about all the different research, but there is a lot of evidence out there and I am quite happy to pass that on to the committee so that it can dig further.
I mentioned Dr Contreras. His clinic has been running for 50 years and was started by his father. The success rate there is twice the rate that we have here, so they must be doing something right that we are not doing here. Just go and have a look at it.
Where is it?
That particular clinic is in Mexico.
I would like to come in on that. My wife has Alzheimer’s and I am flying her out to the Mayo clinic in Florida to get her cured—
Mr Campbell, can you let Mr Adams answer the question, please?
It would be helpful if we could get some information on the clinic so that we could look at it.
As there are no further questions, the committee needs to decide what action it will take on the petition. I suggest that we write to the Scottish Government, the Scottish cancer task force and Cancer Research UK, asking about the extent to which choice of treatment exists for cancer patients and for views on what the petition seeks.
Members indicated agreement.
I suggest that we also contact the General Medical Council to seek its views.
Okay.
We need to take on board what Mr Adams has alleged with regard to Cancer Research UK, given that it is one of the charities that we intend to write to.
Is it possible to wait until we get the information from Mr Adams on the evidence from around the world that he suggests is available? That might be helpful.
That would be helpful but, in the meantime, we should probably go ahead with the action that we have just agreed. When we get all the information back, we can make a decision on the petition.
That is why I would prefer the committee to choose option 2 in the clerk’s paper rather than option 1.
Well, we have agreed to go for option 1.
I thank Mr Adams and Mr Campbell for attending.
Meeting closed at 11:30.Previous
Current Petitions