SOCIAL AFFAIRS POLICY REVIEW COMMITTEE

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1 S T A N D I N G C O M M I T T E E O F T Y N W A L D C O U R T O F F I C I A L R E P O R T R E C O R T Y S O I K O I L B I N G V E A Y N T I N V A A L P R O C E E D I N G S D A A L T Y N SOCIAL AFFAIRS POLICY REVIEW COMMITTEE PERSONAL CAPABILITY ASSESSMENTS HANSARD Douglas, Wednesday, 11th May 2016 PP2016/0097 SAPRC-PC, No. 1/15-16 All published Official Reports can be found on the Tynwald website: Published by the Office of the Clerk of Tynwald, Legislative Buildings, Finch Road, Douglas, Isle of Man, IM1 3PW. High Court of Tynwald, 2016

2 Members Present: Chairman: Mr D C Cretney MLC Mr G G Boot MHK Hon. S C Rodan SHK Clerk: Mr J King Contents Procedural... 3 EVIDENCE OF Ms M Brabbs, Independent Abuse Adviser, Safe, Strong, Secure 3S Isle of Man.. 3 Ms Marshall was called at 3.08 p.m EVIDENCE OF Ms C Marshall, Chairman, ME Support The Committee sat in private at 3.40 p.m SAPRC-PC

3 Standing Committee of Tynwald on Social Affairs Policy Review Personal Capability Assessments The Committee sat in public at 2.34 p.m. in the Legislative Council Chamber, Legislative Buildings, Douglas [MR CRETNEY in the Chair] Procedural 5 10 The Chairman (Mr Cretney): Welcome to this public meeting of the Social Affairs Policy Review Committee, which is a Standing Committee of Tynwald. I am David Cretney MLC, and I chair this Committee. With me are the Hon. Steve Rodan, Speaker of the House of Keys and Mr Geoffrey Boot, Member of the House of Keys. If everybody could ensure that your mobile phone is off or on silent, so that we do not have any interruptions. For the purposes of Hansard I will be ensuring that we do not have two people speaking at the same time. The Social Affairs Policy Review Committee is one of three Standing Committees of Tynwald Court, established in October 2011 with a wide scrutiny remit. We have three Departments to cover: Education and Children, Health and Social Care and Home Affairs. On Tuesday 15th March 2016 it was resolved: That Tynwald is of the opinion that the operation of the personal capability assessments should be referred to the Social Affairs Committee for examination and report by June We invited written submissions from anyone who would like to comment on this matter and today we are hearing from two of the people who have responded. EVIDENCE OF Ms M Brabbs, Independent Abuse Adviser, Safe, Strong, Secure 3S Isle of Man 15 Q1. The Chairman: Welcome, Marcia. Could I start off by asking for the record, please, would you state your name and the organisation that you represent? Ms Brabbs: My name is Marcia Brabbs and I represent Safe, Strong, Secure 3S Isle of Man. 20 Q2. The Chairman: Thank you. Perhaps you could explain what the organisation is and what it does? 3 SAPRC-PC

4 Ms Brabbs: Safe, Strong, Secure 3S is the only specialist abuse charity on the Island. I am known as an independent abuse adviser. However, my contact with Wendy Dale who had the assessment done actually came through the other charity I work with, which is PrisonWorks Isle of Man. Her son was in the prison and I assisted her with visiting him; and then during that time realised that she had been a victim of abuse during a marriage. And the relationship just continued after he was released. She was in the process of being asked to make out a CV for Jobseekers and asked if I would help, and that is when she presented me with the assessment and said, I would really appreciate it if you had a look at this, I trust you. And that is when the questions started to be raised. Q3. The Clerk: Can I just ask sorry, Mr Chairman is the person you have named happy for you to use her name in public? Ms Brabbs: Yes, she is. I did send that through with my written submission. She is more than happy for her name to be used and for her actual assessment to be looked at as well. 40 The Clerk: Thank you. Q4. The Chairman: And, just for the record, could you confirm again your position and how long you have been in the position in the organisation? Ms Brabbs: With Safe, Strong, Secure I am an independent abuse adviser. I am one of the founder trustees for the organisation and we set up as a charity in the Isle of Man in May Q5. The Chairman: Thank you very much. Perhaps to start off, would you like to make any opening statement or any words you would like to? Ms Brabbs: As a way of a general opening statement, I have to say that I think the whole process should have been handled a bit better with regard to how people were going to feel about what was happening. I do not think the emotions surrounding this situation were taken into consideration. We are talking about vulnerable people and they are getting benefits, many of which can be challenged; and we are talking about people who are very honest people for the most part. I am aware there are some who take advantage, but most do not. And so, quite honestly, a lot of them feel as if they are being accused of lying and that evokes more emotion. I just do not think the support was put in place to allow them to have somebody to lean on for what was going to be a very emotional experience, no matter what was happening. Q6. The Chairman: And what are your main concerns about the personal capability assessment process? Ms Brabbs: Again, I guess that I do not think adequate support was provided emotionally; but I also found the form itself not to be of the calibre that I would appreciate for what we were spending for it. I found multiple errors in the form, typographical errors; I found the form to be confusing, things were not on proper pages; there were points missing from one question and boxes were not lined up for another one. There were two pages where there were questions that were pointed, but then those points were not included in the total. We found out later that, supposedly, there should have been wording on the bottom of those pages saying they were not to be included but then I question why have the pages and why have the questions pointed? So those are just some of the things. 4 SAPRC-PC

5 Again, I questioned the people who were carrying out the assessments what were their qualifications for doing the assessments? They certainly were not known to the individuals; and again, as I said, these are vulnerable people who are nervous to begin with. There are trust issues involved. There was no support provided or encouraged to be brought; and I found, certainly in the case of Wendy Dale s form, I thought it was sloppily done. There were questions that were not answered, there were questions that were answered with the same yes and no answer, and later questions did not rely on previous information. So it kind of went back and forth a bit. Q7. The Speaker: Can I ask through you, Chairman: you made reference in your written submission in which you have referred to quite specific errors in the assessment form. Just for the record, I wonder if you could publicly tell the Committee what those specific errors were in the particular case you were dealing with. Ms Brabbs: In the particular case I was dealing with regard to the form, if you will give me a moment I will go through what I have in front of me. For example, on page 1 of the form there is a question that asks for the medical history, and under Conditions medically identified on a form called 113, a GP was asked to fill this out. I think it should have been specified that the GP who was completing it should be the GP for the person who was being assessed. In the case of Mrs Dale, someone else, a different GP, filled out the form and actually responded that they had not seen her since Well they are not her GP! Further on Q8. The Speaker: Sorry, is this the form that the claimant fills out? 100 Ms Brabbs: No, this is the form the assessor filled out page 1, that the assessor filled out. The Speaker: Page 1 of the assessment form. I am just referring to that in the file that we have. Yes, okay Mr Boot: Excuse me, Chairman, but it says on the form, When did your patient last see a GP? If I am looking at the correct form? So presumably that would have been on her medical records regardless of whether it is Ms Brabbs: I am looking at her form in front of me if you would like to see the answers for number 3, if you are looking under List all diagnoses yes? Mr Boot: I am looking at the form that says, About your patient. 115 The Chairman: Maybe we are looking at different forms. Ms Brabbs: I am looking at the actual assessment form the 27-page assessment form. The Clerk: I do not think the Committee has the document you are looking at 120 Ms Brabbs: Oh, do they not? Q9. The Clerk: If you did send it to us it must have gone astray. What the Members are looking at is a blank form that they got from the Treasury. Is that right? 125 The Speaker: Yes, I am looking at the form, page 1 of which has all the claimant details. It is 25 pages. 5 SAPRC-PC

6 Ms Brabbs: Is that the same? The Speaker: Yes, that is the same form: page 2 is the list of medications, page 3 is largely blank, page 4 is Mobilising Activity 1 and then it goes on to page 7, Activities 2, 3 and 4. At the top it says Ms Brabbs: Yes, I think because this has been filled in I am wondering if it has pushed things down on the pages, because my paging is not exactly the same as yours. The Speaker: Yes, okay, we have basically got the same form. You made a reference to page 12 of the form, Activity 6. Ms Brabbs: Yes, that is correct. The Speaker: On the speech, Making yourself understood through speaking, writing, etc no points are assigned to the third question Ms Brabbs: That is correct. Q10. The Speaker: and the boxes for the assessor s x are misaligned. The fact that there were no points assigned in the particular case that you were dealing with, did that have a material effect on the overall score? Ms Brabbs: I believe it was incorrectly answered, and so yes it did; but I also say that if you look at her form it looks as though that box has been checked. If you can see, again, from my image, if you put a red square around the question in which box you are ticking for the answer, that x is in the box for that question. So you tell me, was that supposed to be the bottom box saying none of the points, or was that supposed to be Yes, she does fulfil that requirement and therefore she should have been awarded those points, which are missing? The Speaker: Yes, the question being: Has some difficulty conveying a simple message to strangers. And whereas other questions have a number of points assigned, this is just left blank. Ms Brabbs: Correct. The Speaker: And my question was, if points had been assigned would that have made a difference? Ms Brabbs: Yes, it would have. Q11. The Speaker: And is this particular case still before appeal? I think it is important to ask that. Has the appeal made on behalf of this individual been concluded? Ms Brabbs: No, it has not. We have not received an answer. Q12. The Speaker: So it may be that the complaints you are flagging up about the inadequacy of the form may be actually addressed in the appeal? In which case Ms Brabbs: No, the answer I actually got back was that her assessment was looked at and they had felt that the final box was being ticked; and so None of the above apply is what they were saying and therefore she would not get the points. 6 SAPRC-PC

7 180 But in our appeal we supported why she should have got those points, based on everything else that was presented in the form. Q13. The Speaker: Okay, but that appeal is still to be determined? Ms Brabbs: Well, ostensibly, but as I said I did receive a specific answer back about that one, and they told us, No. The question should have been marked as, None of the above apply for her. Q14. The Chairman: Could I just ask, are we past the internal reviews phase and we are waiting for appeal? Is that where it is up to? Ms Brabbs: She has filed an appeal. We have filed the appeal and we are waiting for something to come back, yes. The Speaker: So it would probably not be appropriate to discuss with reference to her individual case pending the appeal outcome. Ms Brabbs: Yes, alright The Chairman: Right, yes. The Speaker: However, for illustrative purposes of deficiencies, which you would say are on the record, you may indeed refer to those. Ms Brabbs: Yes, okay, I understand. So you do understand my concern with that question and the boxes... which box are you? The Speaker: Indeed, thank you Ms Brabbs: And I have a concern that the assessor did not notice the point value was missing, especially when they were going through and adding points up. Q15. Mr Boot: Can I just ask a question there? Are you saying that the questions are wrong, or the fact that the assessor made a mistake, and/or that the boxes do not line up properly is the problem; or whether the questions are the problem? Ms Brabbs: It is a combination of all three, depending on which one we refer to Q16. Mr Boot: In that particular instance, then? Ms Brabbs: In that particular one it is the way it is lined up the fact that the point total score is missing and the fact that the boxes are not lined up properly. I question whether the person completing it really understood which question they were answering, or which answer they were ticking. Q17. The Chairman: In response to Mr Speaker s comments in relation to you and Wendy Dale, you will be aware that Tynwald has imposed a fairly tight timescale on the Committee to review this matter, and it perhaps might have been better if you had gone through the whole process. But timescales do not provide for that, really. I do not think there are any further questions in relation to the personal details. 7 SAPRC-PC

8 Have you any other clients who have complaints about the personal capability assessments? 235 Ms Brabbs: I have had at least one but there are certainly others that we have not got into, because everybody is at a different stage. Did you want me to tell you about other problems with the form, or are you happy? The Chairman: Yes, please Ms Brabbs: The form is poorly laid out and presented. On page 1 at the bottom it asks for history, there are columns where it is written: Choose type Yes or No choose but then there is no space for any answers to be put into the Yes and No choices. I had a problem with the form in that it asks about medications, and yet the reality is that people have been asked to fill out a questionnaire two weeks prior to the assessment and they gave all this information. They were not asked to bring the information again, but then they were questioned about it and felt as if they were in the wrong because they did not have the answers they did not have that information available. I do not understand why, if they had already filled out a form that answered all this, the form then asks for that information again. The Chairman: Yes, that is a fact. I attended with somebody and that same situation arose, where they had done the original thing and filled in the medication, and then were asked again. So I am aware of that. Ms Brabbs: There was a typo on page 8 under Balance and stance which, again, just gives a very bad impression of the company that is providing this service for us. I would hope that, in this day and age, things are proofread. It refers to whether or not the claimant had any bags and then they describe the ability managing gags. Q18. The Speaker: Which activity is this? Is this Activity 2? 260 Ms Brabbs: On my form this is on page number 8, it is Standing, sitting, reaching and moving items Activities 2, 3 and 4. The Speaker: Yes, I have got that. 265 Ms Brabbs: Two-thirds of the way down. The Speaker: Yes. 270 Ms Brabbs: Did the claimant have bags? And then underneath it says, Describe the ability managing gags. Q19. The Speaker: Is this Activity 2 that we are talking about, or Activity 3? 275 Mr Boot: Gags, yes. Ms Brabbs: This is still considered Activity 1. Mr Boot: I have found it, Describe activity managing gags. 280 The Chairman: It is no joke. 8 SAPRC-PC

9 Ms Brabbs: Again, another typo on page 9 they are asking her about hanging clothes outside and they have got hanging cloths outside. Poor presentation: the column headings are missing from the columns, so you are filling in five columns but the column headings are actually in the middle of the box instead of at the top. You can see that? Yes? Do you see where they have got Washing up; Use a dishwasher; Call emergency services; Use of washing machine? You have got five unheaded boxes, and then it says A=independent; B=independent with some difficulty that is actually underneath those questions. The Speaker: I do not have that on my copy here. Mr Boot: On our form it is above the questions. 295 Ms Brabbs: Well it is not on this one! Mr Boot: Maybe it was corrected. 300 The Speaker: I think it would be helpful, Chairman, if we could get a copy of that particular evidence. Q20. The Chairman: Yes, I was going to ask if it is possible Ms Brabbs: Most certainly. Q21. The Speaker: It would be helpful if, for the record, you set out what you see as the deficiencies and we can refer to the Hansard when we go through the document later. Ms Brabbs: Okay. So is that one understandable enough from what I have already said? Yes? It is where the headings that should be above the boxes are actually underneath the boxes. (The Speaker: Right.) Again, I think it is poorly laid out. If we continue on to those pages that I referred to... in mine it is pages 17 and 18, and the page is headed Mental health, cognitive and intellectual function. (The Speaker: Yes.) We then have two pages full of questions, all of which are assigned point values, but then those points are not included in the total score. But that is not indicated on the form. But as I also said before I was then told, Actually it should have said Do not include these point totals in the form. But I question then, why have the questions pointed? Q22. The Chairman: Okay, was there anything else? Ms Brabbs: Is that one clear? (The Chairman: Yes.) I believe that all the rest were just regarding the way the assessment itself was carried out. Q23. The Chairman: Okay. I asked you if you had any other claimants and you indicated there was at least one who you had assisted. Would you like to say whether this was about the same issues with the forms? Ms Brabbs: It was the same issue about obviously the form and understanding the form, but also just the anxiety that the whole situation caused around the assessment being done. And also very much feeling if I am allowed to say this my impression in going through the form was that the assessor really was not focused on their task. The impression I certainly got from this form was there was an assessor that was very much focused on a physical disability, which neither of my clients have. Their disability was always 9 SAPRC-PC

10 emotional anxiety and stress, and the assessor seemed so focused on the fact that they could do physical tasks that they completely ignored the emotional that was going on. For example, in Wendy s case the assessor noted more than once that she was weeping and crying, plus, plus, throughout the assessment. And yet it never occurred to the assessor that maybe it should be halted; that maybe it should be rescheduled; that maybe they should insist that a support person was present. I find that very concerning. Q24. The Speaker: There was an expectation in that case that there would be an accompanying person. Ms Brabbs: Well, Wendy certainly expected it and, as I explained, I can understand now that I have visited the premises and seen where the assessment office is, I am not surprised that the person who dropped her off got confused. This assessment office is something new as far as we are concerned and in spite of my accent I have lived on the Isle of Man for 21 years! I have never seen this assessment office there before. The person who dropped her off parked in Chester Street car park and automatically went to the Promenade Medical Centre; and sat there waiting for 20 minutes wondering, Where is Wendy? Why is no-one coming to get me? Wendy, in the meantime, was sitting where she was supposed to be. She got called to go in, she explained she was waiting for a friend and they said, Don t worry, as soon as she shows up we will bring her in. Obviously the friend was not going to show up. Wendy felt too embarrassed and anxious to call her friend. The person doing the assessment never said, Why don t we give her a ring? Wendy had turned her phone off out of politeness. So it was a total miscommunication from start to finish and I can see why it would happen. Q25. The Speaker: Are there other instances where this happens, do you think, from your experience, where the actual surroundings are intimidating? Ms Brabbs: Yes, very much so most definitely. And, especially, I am talking from the point of view of somebody who is coming from abuse most definitely. We feel very insecure and, like I said, there are trust issues. The person that we trusted the most turned around and hurt us, and so we are just not really sure what is going on. Again, the clients I have had are dealing with a lot of anxiety and a lot of emotional issues. Again, one of the reasons we became victims of abuse is because we do not feel comfortable speaking up. We feel like we are making a fuss; we feel like we are causing problems where we should not be; so we do not stand up for ourselves enough. And everything about this situation put those people right back in that place again. Again, the comment was made that the assessor asked Wendy if she wanted help and Wendy said no. That should not be surprising to anybody who has been involved with abuse. To all intents and purposes the assessor did not mean it, but she was putting Wendy in a position where she felt she was back being abused again. You are not going to ask the person who is choosing to abuse you, for help. As I said, the woman had commented herself, she was weeping and crying that is going to cause you to be embarrassed, it is going to cause me to feel insecure and like I am just not capable. Am I really going to turn round and ask for help? If I had had that confidence I would have stopped the assessment and said, I can t do it. And she was too embarrassed to do that. Q26. The Chairman: Is there any way in which you think the process could have been made more suitable for somebody in Wendy s position, who might be under stress or anxiety? Ms Brabbs: Yes, I definitely think that support should have been offered from the start. So, in short, We are going to be doing these assessments and we realise you might need some extra 10 SAPRC-PC

11 support. And whether there was somebody who was already available that we could then give a heads-up, and some training in what was going to happen and to prepare her for it. And certainly insist that somebody would be with her just like we would for any important doctor s appointment. Again, the whole idea is that any time we are put in a situation where we are not knowing what to expect, we are vulnerable. Whether or not I am the CEO of a company; whether or not I am a professional; whether or not I have a degree when I am put in that uncomfortable position I suddenly become vulnerable. I am in the spotlight, my head is not working in the way it normally would. I am more nervous than I would normally be and I am not picking up details I normally would. Somebody should always be there to just, if nothing else, give security but also to help explain Did you understand the question? And if I did not understand the question certainly my client did not understand the question. It would have made it all a little bit more human and I think we were missing a lot of that in this whole situation. The humanity was gone, it was overlooked. We were not taking into account how much emotion and anxiety was attached to it. Q27. The Speaker: In your experience, how many of the assessments take place unaccompanied? Ms Brabbs: Everyone that I know attended... Wendy had asked someone to attend. The other people attended alone; but I knew of a couple of individuals who were getting ready to have assessments and it was only because of my experience I then said, Do not go alone. They mentioned it to me because I mentioned that I was involved with this, and they said, As a matter of fact... and I said, Please do not go alone; I will go with you. Can you get someone else to go with you? The good news is they then arranged to have somebody with them somebody that they already knew and trusted. But in a couple of those cases the assessment has now been cancelled I assume while this Inquiry is going on. Q28. The Speaker: Would you assume that an individual who was intending to bring an accompanying person who did not turn up, that the assessment should have been halted there and then? Ms Brabbs: I would hope that they would arrive with the person because, if nothing else, they should also be driven they should not be driving themselves, they should not be making their own way. Ideally that person should be accompanying them from the moment they leave their house or their place of work. Again, they are going to feel uncomfortable, they are going to feel stressed, and when it is over they are going to be tired. Ideally they should be with them from the moment, so it should not be a matter of the person suddenly not showing up. But certainly if they do not show up... although I am aware that it could cause an issue if it became chronic, I do think the assessment should be halted. The Speaker: Thank you. Q29. The Chairman: On the basis that you think the assessment should be halted if somebody is going to be accompanied, do you think that advance notification that you are going to be accompanied should be provided? I have been with a couple... one who did get emotionally upset during the process and was crying. But I was with that person and in that instance the person gave them some time. But do you think it would be helpful in advance for the process to be? 11 SAPRC-PC

12 Ms Brabbs: Certainly in order to see that the process is not unnecessarily being delayed or anything like that most certainly. I would be strongly encouraging people, please bring someone with you and this is why we think it is an important thing. I would give them the opportunity to ask questions beforehand, of whoever whether it be you or your appointee can ask questions beforehand. And of course would you please let us know who is going to accompany you, what their relationship is with you; and, if necessary, contact details because maybe the person themselves would not show up and here is a second person for you to find out what has happened. Q30. The Chairman: We may well be hearing from representatives of the Treasury later on in our Inquiry. What would you like us to ask them or tell them? Ms Brabbs: I think I said it in my , and I hope nobody was offended by it, but I have a very real concern. My understanding is that we paid this company 250,000 and I would expect a lot better for 250,000. Maybe I will be told it is not much but to me it is, as one of the taxpayers. I think they could have handled this a lot better. Again, as I said, from a point of professionalism the form is not very well laid out and is not very well presented. The assessor answered questions; and there were some questions where they answered both yes and no to the question. There were other questions that they skipped completely. Why? They then did not rely on information from previous questions when answering later questions. So, again, I question the credentials of the people who were doing the assessments or even their lack of professionalism. I think that it was a decent contract and I would have thought anybody would have been proud to be doing this for us, for the Isle of Man. Unfortunately, the company did not live up to their name of being dependable. And, to me, these were just very basic 101 things. Get your form right; make sure your assessors are professional; make sure they are presenting professionally; make sure they are listening. And again, as I said, I would have thought they should have been familiar with the fact that people do need support. It is a very emotive time and to have people there alone is a bad idea. It is a bad idea from the point of view of the assessor as well, I would have thought, for their own protection if that is the word. It would have been better for them to have someone there also. Q31. The Chairman: In terms of before they even go for the assessment, with the original 20- odd page form, do you think that would present challenges to some people? Ms Brabbs: If they were given the form or the fact that it is that length? Q32. The Chairman: The fact that they are given the form and perhaps they are in their own home and they may have difficulties in terms of filling it in. Do you think? Ms Brabbs: Oh, they certainly would not be able to fill it in. Again, with Wendy and I realise that these are separate issues but part of what was surrounding this issue is, quite honestly, the way we handle the whole benefits system. Wendy had a change in her circumstances and we went to notify the office at Markwell House. She was handed three more forms to fill in. She is nervous, she starts to get confused; I am not exaggerating, she cannot write her own name. And do you know, the first two pages of all three of those forms asked for the same information. Why? We are in a computer age, we have computer terminals. I would have thought that there should be a computer terminal at the desk or at the window to open up her 12 SAPRC-PC

13 file you have already received this information. How many times? Ask her for the information that is missing, or the information that is new. But to ask her to fill out three more forms most of which are the exact same information... It is emotive, it is confusing. There are people with learning disabilities; they do not read that well. It is very demeaning and I think it is very unnecessary. I also feel for the people on the other side of the counter. Why are we generating all this paperwork? Why are they having to fill these forms in again? They are sitting in front of a computer, for three more forms that are all showing them the same information. We are in a situation where we are trying to save money, cut down on costs. Well, printing costs, paper costs, time costs and I see this as a lot of time-wasting. Q33. The Speaker: The whole intention of the exercise, of course, as we have been informed, is not to save money but to help people back into the world of work for their own benefit. Is it not true that it is perhaps in a handful of unfortunate cases only, that we are hearing about today, that the system can be thought to be breaking down? The test is the ultimate outcome and the fact that so many people who have been through this system are either helped into work, or relatively few have the initial assessment overturned at appeal demonstrates actually that the system is working? Ms Brabbs: The system should not cause harm and, at the end of the day, every single person matters. There are ways that it was easier to make this so that it was not hurting people. Wendy s stress levels have increased because of this. She talked to me about wanting to go to bed at night and not wake up in the morning. She is now suffering from heart problems and is wearing a monitor. All of this, she believes, was brought on by this assessment and the way it was administered. It was wholly unnecessary. So even if only one person got hurt, I say that one person matters because they certainly matter to me and I am certain they have got family and friends they matter to. So while I totally understand there are some that maybe are not trying as hard as they should and that maybe should be put back into work, there is always a kind, gentle way to find these things out and we are supposed to be supporting these individuals. Whether or not it was supposed to be a money-saving exercise, it should not be a moneywasting exercise. What I see is a lot of money wasted. I think it could have been handled differently from all those points of view. Again, we already had doctors dealing with these people; did we need another assessor to come? Why couldn't the doctors that already know these people and work with them answer a lot of these questions or have been talked to first? I have talked about the waste in paper and ink and all the rest of it, and now I can imagine what we have gone through in the appeal process. So like I said, I do hear you that it was not meant to save money but I do think it has wasted a lot of money and that is not desirable, either. Q34. The Chairman: Is there anything else you would like to say that you have not had the opportunity to say yet? Ms Brabbs: No, I think that was everything; and I do appreciate the chance to say what I had to say. The Chairman: And you said it very well; so thank you very much. Ms Brabbs: Thank you very much. Ms Marshall was called at 3.08 p.m. 13 SAPRC-PC

14 EVIDENCE OF Ms C Marshall, Chairman, ME Support Q35. The Chairman: Welcome. For the record please could you state your name and the organisation you represent? Ms Marshall: My name is Celia Marshall. I am Chairman of a group called ME Support, Isle of Man, and that is a self-help support group for anybody on the Isle of Man who is suffering from ME myalgic encephalomyelitis. Q36. The Chairman: Thank you. Could you explain what the organisation is and what it does? Ms Marshall: We are a self-help group and we provide support, resources and advice and opportunities for social interaction for people with ME. Q37. The Chairman: Thank you. Again, would you like to make any opening statement please? Ms Marshall: We have 172 members, of whom 126 suffer from ME; however, it is estimated that there are 350 sufferers on the Island. Probably a quarter of these are people who are severely affected and so they may be housebound or bed bound, possibly for months, or years or even decades. I have here the results of a survey completed by 62 of our members, which I would be happy to share with you. It is an invisible illness. Basically, when someone is badly affected they just stay at home and no one sees them. However, if they rest for a few days and are able to come to the office for an appointment, then they do not look ill. The staff will not appreciate that this is a short window and the patient may well spend most of the rest of their week in bed. The personal capability assessments are causing our members considerable distress and harm to their already very fragile health. ME has many symptoms including very severe fatigue, pain, post-exertional malaise and brain fog. It may therefore take a number of weeks for a sufferer to fill in one of the forms; so people need plenty of time to do this. Critically, if they push themselves to do more than their own optimum activity level, then they wear out their energy batteries and they may well relapse. The assessors need a much greater understanding of the extent of the disability caused by this very serious neurological disease. They need to help those currently outside the system access it in a way that is within what they can safely do. Relapse is very dangerous with ME and can last days, weeks, months or be permanent. Most of the questions on the form have little relevance to a person who is disabled by their total lack of energy, probably resulting from mitochondrial dysfunction or vastly impaired ability to store or replace energy. As Marcia put it, the assessment is totally focused on physical disability like you have not got an eye, or you have not got a leg. There is no sensibility towards disability caused by emotional or fatigue. A major problem is that the GPs do not always give up to date information to your assessors. This is because there is no consultant on the Island with an interest in ME and no proper pathway for diagnosis. The GPs have now received one afternoon of training delivered by three specialists from England and funded totally by ourselves. However, the GPs still have little support and many still have little understanding. GPs are reluctant to do a home visit and our members are often too ill to visit the GP. The current ME service consists of an occupational therapist who has just three hours per week to support 350 patients. 14 SAPRC-PC

15 Dr Mahajan, the Medical Director, does have an excellent understanding of the condition. When we met her in November 2014, 18 months ago, she set up a steering team to investigate the setting up of a proper ME service. However, this steering team has not yet submitted its business plan. Using the latest figures from the Institute of Medicine in the United States, scaled down to the population of the Isle of Man, the estimated cost to the Manx economy is between 3 million and 4.25 million. The pattern of ME is deterioration of condition until a diagnosis is made and support, by such as yourselves, is given. Then the patient will often stabilise. The importance of early diagnosis and support cannot be overstated, to reduce the long-term cost to the individual, their family, and the economy as a whole. I want to show you the extent to which a patient who is very severely ill may look okay and be unfairly assessed. Craig Morris is our Resources Manager and very much the brains behind most of what we do. He used to be Head of English at King William s College and run marathons. He became ill over six years ago. Unfortunately, he received bad medical advice and so kept trying to exercise and push himself to do more. Consequently, he became worse and worse, until he could no longer talk or think and barely move. Through good management of his disease he now has a window when he can engage in conversation, after which he must rest. His parents are his carers and he needs a wheelchair to go out. However, he has recorded a video message for you and with your permission I would like to play it. Mr Chairman? The Chairman: Thank you. Mrs Marshall: If it works. It is not very loud, unfortunately, so I hope you are not deaf The Clerk: Would we be able to have it electronically afterwards for the record? A video message was played as follows: Mr Craig Morris: The Institute of Medicine in America reviewed ME comprehensively and said that: It is clear that ME/Chronic Fatigue Syndrome is a serious, chronic, complex, multisystemic disease that frequently and dramatically limits the activities of affected patients. It is really important that they said this in Feb 2015 because there remains great stigma, ignorance and denial around ME. It is very easy to damage the health of such ill people through ignorance and indifference. ME is so severe and debilitating and so many of us are affected that it must be taken more seriously, not just because of the suffering and distress it causes individuals and families but because of the societal cost that failure to diagnose and treat it causes. We are a poorer society without the people from the shadowlands and I hope this Committee will help our voices be heard so that those of us who can rejoin society may be helped to do so. Living with ME is being constantly close to collapse. It takes every ounce of everything you have got just to keep going with ME encountering an unsympathetic system that does not understand or accommodate your needs, and may well be disbelieving too, can be too much. Many sufferers withdraw to protect their health and fragile sense of self-worth and are further isolated. Many have been so for decades and, unless people speak out on our behalf, such quiet tragedies will continue unregarded. We must not repeat the mistakes the medical system made with me and has been doing so for decades. The neglect we face in the medical system complicates getting benefits because of lack of diagnosis and understanding on the part of medical professionals, and it is therefore 15 SAPRC-PC

16 hard for benefits assessors to understand an illness not necessarily understood by the person with it, their carers, or their GP. Such ignorance also compounds problems by making us worse; and exponentially so under stress. ME is sometimes explained as 'chronic fatigue' but this unsympathetic and misleading nomenclature makes people think we are 'just a little tired'. As a nurse at Noble s recently said to me, 'I get tired too'. This complex and fluctuating condition has a cascade of symptoms across major organs and systems that need to be taken seriously, recognised and talked about. There are over 50 symptoms of ME across neurological, vascular and cardiovascular, muscular, hormonal, immune, cognitive and other systems, and other symptoms such as hyper-sensitivity to light and noise; and orthostatic intolerance can be very disabling too. I have never been spoken to so patronisingly as since I fell ill with ME and the experience is particularly upsetting when the people I am speaking to are medical or social service professionals. ME may not in most cases be 'fatal', but it is in some; and ignorance needs to be tackled at a systemic level if people with ME are to be treated with respect and compassion. We want to have our quiet voices heard, not our health damaged. Lack of clear information, added to our cognitive and communication difficulties and a social care process ill-adjusted to the very poor stamina of people with ME, makes interacting with the benefits system very challenging and damaging to our fragile health. Requests for help and information may not be understood or granted, and such ignorance needs to be challenged. We need a lot of time to process to manage the little energy we have sparingly as it is needed for personal care and just making it to the next day. It may take weeks to fill in a form that would take someone less severely disabled half an hour to complete. We should have the right to take control of our lives and health and rehabilitation; and being given respect, not patronised, is part of this. The process for applying for benefits can be unnecessarily physically demanding and cognitively, too; and at least 25% of our members, people with ME, cannot get to a benefits office without harming our health. It will take them days to recover and for some it may be longer weeks, months or not at all. Anything physical, emotional or mental is draining in a way that unless you have ME yourself or care for a family member who does have it, you probably do not understand maybe you can't. We are missing out on support with personal and domestic care, with aids and adaptations for our homes as well as the obvious financial benefits that being able to access the system would allow. Better understanding of our illness and symptoms would help reduce the severity of their exacerbation, of symptom amplification and relapse and vastly improve prognosis. This is in everyone's interest and the research is already there showing early diagnosis and support vastly improves prognosis and quality of life of our members who feel neglected, isolated and as if we have fallen through the cracks of society. We are desperate for this research and for our voices to be listened to. Thank you for listening and for my parents who care for me 24 hours a day, without whom I would not be well enough to speak to you now. Ms Marshall: That is a transcript of my statement and Craig s. 685 Q38. The Chairman: Thank you. Is it possible to forward the video in an electronic format so that we can post it on the website? It was challenging to hear it, particularly for the people who were Ms Marshall: I cannot just it to you, but I will get it to you somehow, yes. 690 Q39. The Chairman: Thank you very much. Thank you for that and please pass on our thanks. 16 SAPRC-PC

17 Going back to our questions: how many members of your association have come forward with problems regarding personal capability assessments? Ms Marshall: I do not have the exact figures on that because it is more when I just chat to individual people. The main thing that comes across is because the form... if you are blind, or if you have not got a leg, or something like that, people could see that. But there is this lack of understanding, because if they do make the effort to go to the office then everybody just assumes that they are absolutely fine. And this business of filling in forms: I have had a number of people come to me who have got the form and it will take them... they call it brain fog which means they really cannot work things out. Say you have got someone who is still trying to look after their children and they are trying to work out this form it will take them a period of weeks. And I know if you go and get a form from the office there is a date at the top and it must be back in such-and-such a time, and they will follow you up if you are not there. It is good that they are following people up, but they feel a big pressure which then exacerbates the whole situation. Q40. The Chairman: In your written evidence you explain that the assessment form contains questions that cannot assess a person who is disabled by total lack of energy. In your opinion, how should these issues be assessed? Ms Marshall: We devise our own form because, as I say, one problem is that the doctors do not understand things, and the form is very much, Can you do something? I have got a form that we try and get our people to fill in, which then goes to the doctor, that says: Can you get dressed by 10 o clock in the morning? Or Can you get dressed by 12 o clock in the morning? Or Are you sometimes not able to get dressed until six o clock in the evening? If you can get dressed that is one thing, but if you have a form that just says, Can you get dressed? you will tick it. But if in fact it is going to take you until four o clock in the afternoon to get dressed then you are not going to be able to go to work. And it is that type of thing it is not just can you do it, but how long does it take you to do it. And if you do that they will say, Can you go to the office? I had an instance with a similar thing about going to a pharmacist and asking if he would deliver the medication. I actually took the person down to the pharmacist and of course the pharmacist immediately said, Well you are here, of course you can collect it why do you need it delivered? And I said, firstly, I brought him; and secondly, if he uses up his energy to collect that he does not have his energy to speak to his child. Now, should he not speak to his child for 24 hours because he has used up all his energy collecting the medication... when, yes, tick the box he can collect the medication? It is that sort of understanding about the level of debility that you have if you just have a tiny amount of energy. Q41. Mr Boot: Can I ask: do some of your members actually work at all, or are all of them totally incapable of working? Ms Marshall: They say with ME generally and I think our members follow the pattern there are about 25% who are severely disabled like Craig. If I want to meet with him I need to go to his house, because if he spends his energy coming to my house he has no energy for the meeting. His parents basically care for him, they do all the household things like cooking, clothes and all that sort of thing and he can therefore spend a little bit of time on the computer and then rest; and that is how he spends his day. We have got about 50% of our members who are what I would call moderately affected, which means that some are morning people who might get up in the morning and then they can 17 SAPRC-PC

18 maybe do a little bit of shopping, maybe get dressed, do a bit of washing up or something like that and then they rest for the whole of the afternoon. Then we have other people who really cannot get going and it takes them literally to one o clock before they can get dressed, but then they can maybe do a little something in the afternoon and by saying doing something it might be making yourself some breakfast, or getting dressed. But for many of our people if you can only do something for 10 minutes then you have to rest, then that means you could have a shower but you cannot wash your hair, or you can have a shower but you cannot get dressed it is one or the other. So those are not able to work. We have about 25% who probably can work part-time; and also a lot of our members do have someone who looks after them. But then if somebody, say, is a single parent and they are trying to look after the children, then they could not possibly work as well because that is obviously going to take up all their time. So it is, basically, 25% mild. Some people do get better and we have got a number of people... but they tend to leave our society then, because they just want to forget all about it. They are never cured, but if they improve quite a lot then they are able to go back to work. They always have to be careful what they do because it may relapse. We have people who may relapse for 10 years and then suddenly it comes back. But we have 25% who can live a reasonable life as long as they are careful. So it is very much a mix. (Interjection by Mr Boot) How severely you get affected is very much, as I was saying, dependent on how much support you are given to start with. If, as with Craig, you are not given any support and he was adamant he was going to follow all the doctors advice and they kept saying, Oh no, you have got to go and exercise otherwise you will de-condition... and all this sort of thing. And a number of our other members very quickly realised that it was not working for them so they just, thankfully, ignored the doctor. We have a lot of members who have tried to engage with the benefits people and who do not claim any benefits and that is probably great for the Government because it means they are not claiming any money! They really should, but cannot face coming back to the benefit system at all. And if they have got somebody in their family who has some sort of income one way or another, then they just do not engage with the benefit system at all. Q42. The Speaker: Can I follow that up? Your members who are in receipt of incapacity benefit are the ones, of course, who are being asked to fill in these capability forms; and you say that they can be impossible to fill in for weeks at a time because they physically do not have the energy to complete the form. In how many cases has incapacity benefit been stopped altogether because the forms have not been sent in by the due date, etc? Ms Marshall: I am not aware of any that have actually got to that stage. The ones I am aware of tend to be people who are very anxious about the process, and anxious about the forms. And I stress what Marcia said that you really must take someone with you in fact you must get someone else to fill the form in for you. Q43. The Speaker: How do those individuals contrast the complexity of this form with the application for incapacity benefit that they are currently on? 790 Ms Marshall: In the first place? The Speaker: In the first place. 795 Ms Marshall: I do not know, I have not discussed that aspect with any of them. 18 SAPRC-PC