The fight gets harder broke that little bit more learning from deaths an meeting at the dept of health 10/05/2018.

It’s coming up to 2 years since I will have sadly lost my brother to a preventable suicide in Mental Health Supported Transitional Housing after been allowed to fall through the cracks an not put on any care Pathway by the Mental Health Trust he was under and passed between them and Adult Social Care. I’ve tried fighting for answers challenging the system and asking why, How could they ignore the signs, ignore his pleas were was his Duty of Care. I’ve been dipping in an out of NHS Englands Learning From Deaths work and the team leading they are trying but just like us Families I think they’re up against it too. How do you change an archaic driven system,. Today I was invited to a 1 hour meeting with the department of health and was speaking on 4 areas that need addressing and helping push the guidance through that families put their blood sweat an tears into, my mum an I we too put ours. Today I was focusing on the legal power imbalances families face in fight for answers and the hurdles we have accessing our loved ones records an when u get its only a half story an leaves you with even more questions and thing today I let some of the frustrations feel come out an do normally try hold it together thing seeing my loved ones and loved ones of fellow families made me want demand answers as to us after that meeting we don’t go home forget about, put to bed let something reprioritise it because we have the stark reminder someone is missing, for many it’s their child and they’re robbed of seeing them grow, get married, achieve their dreams an them one day get married an families of own, With Tim I’ve been robbed of my best friend we was like two peas in a pod he was the one who guided me though some of my darkest moments an their at my proudest looking at his photo in that meeting hit me wanted scream you all murdered my brother your systems, processes and pathways are harming not helping in our fight one thing we hear regularly is “failure in breakdowns in communication ” a gp can’t see Paris and record on it the NHS can’t see the gps system one and record and that and the grey area duty of candour is not assisting an a hinderance is the grey area of confidentiality an record sharing or in Tims case not record sharing and when you add local council record keeping an the supported living recording system it’s no wonder tim, us as a family an his navigator was hitting brick walls. Failure in communication is not an acceptable answer to why someone is driven too take their own live, before the meeting I was chatting with my sister on how we feel about Tims death an we want to be angry with him but we understand he wasn’t ok an today I needed let some of that anger an frustration how dare they say computer said no surely that should be something can change. Telling Tims story an where we are at with the inquest process is frustrating we’re gridlocked an at a standstill because we’re going through a judicial review because sadly the coroner is listening to two sides an not the side that matters us that matters the family. If my brother’s death had been in hospital we’d have been granted a Article 2 enquiry automatically if was a NHS run supported living would have done but because Social Care the coroner’s using the grey area death in community. I told them today if we lose the review we lose all legal representation and aid and have to fight for answers alone and that many families met recently had represent themselves an that any requests had were denied and so outcomes didn’t go in their favour they didn’t get their answers and left now fighting that bit more yet the evidence was clear for all to see, I told them I should be grieving my brother but I don’t I’m my families advocate I review, critique try put the jigsaw puzzle together and find the solutions to the failings an that’s not fair it’s left me physically an mentally battered and been offered no support by those who failed him apart from a token book coping with death of a loved one to suicide I don’t want to cope with his death I want him in my life I want to know no other family will feel my pain and it’s hard to gage did they listen, take note will things be done and implemented an changed the people in room today can’t expect us to be patient in our quests, can’t expect us be fobbed off to us they’res too much at stake, we just want openness, truth an accountability we need to grieve to mourn, to try lead lives without those we love as hard as it is it’s not fair be gridlocked no we’re further nor nearer to those answers an solutions because whilst we’re gridlocked we add to the growing number of historical cases my family we’re only short way in and we’ve one long road tred but if today taught me anything the fight will get harder, will break me that bit more but it’s not a fight will walk away from Tim deserved so much more and so did the family’s lost loved ones because I’m not going away harmed patients an families too won’t go away because we broke the day our loved ones died you can’t break us anymore so you might as well help us piece ourselves back together let me grieve an mourn let me free my brother’s memory free not keep having air his broken story give us the truth it’s time he had dignity in death let me dream he’s know free with my daughter in heaven I want to let him go and let him be free my family need free ourselves to off our pain an anger. X x

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Engagement session wobble Care Navigation

Today I thought I was looking forward to today’s service User Carer meeting with the Royal College of Psychiatry we was looking at Care Navigators and what a good one looked like, I was all psyched tell them about Tims Navigator Gary Wright the one who went above and beyond for Tim the one who did everything for him the one who services let do everything for Tim but never checked in on was everything ok, never got back to Gary when he had concerns, Gary helped Tim with many aspects of his life even tried addressing Tims mental health needs. Tim was only meant to have Tim on his books for a few weeks but he knew Tim needed intensive support an was not getting from statutory services. I was all excited to share some of the good out of the sadness I tweeted, fb an linked in an update and a pic of Gary with my mum in his fun run tshirt he did a 10k for Wyfi an ran in memory of Tim. But the closer the train got to kings cross did overwhelm swallow me up, I became over stimulated, hyper sensitive walking down to the Royal college of Psychiatry after getting of the tram felt like walking down a minefield the noises of passing traffic, work on nearby buildings, footsteps pounding down the street felt super sonic my mind went into a haze, mentally shutting off, instincts saying can’t engage today I’d triggered myself consciously I thought talking about wyfi been a good organisation would be ok but subconsciously I was challenging why other organisations that came into contact with Tim didn’t do same, i was winding myself up. When I arrived I saw the slide on what we’d be discussing I sat in my seat eyes fixated on the screen I got this but boom tidal wave hit floor was swallowing me up, hands face burning, dry mouth, knees buckling, heart pounding I had get up, I had flee, I made a coffee got upset wiped myself down berated myself I went back in I tried inputting, sharing ideas but everything felt amplified an that made me feel trapped in , hemmed in, panicked which then makes me reactive I know a good navigator why could I not get my points across with going into overwhelm felt not listened to felt I was fighting for something good I felt challenged but probably wasn’t, Care Navigators though I passionately believe in, I know what I’d want in one, I know the type of relationship we’d have I know how I’d want them engage with me, my family an all areas of my life the physical, mental an social but today just not on ball. One of members of group gave me a cuddle I broke its hard fighting for good, it’s hard engage with services it’s even hard engaging when at an engagement meeting. It’s hard though things regarding Tims inquest been know at a standstill and it weighing heavy in my thoughts an heart and today threw me off my A game I’m hoping sharing the slide someone could answer the questions on to them what they’d want a navigator look like because I’ve completely disengaged as I no longer trust the model or service or that they’d get right hoping people can though get their voices heard an I’ll happily forward your thoughts to team an you help me to try focus an be engaged whilst am a little wobbly today taught me need practice self care when engaging in engagement work and trying fight to make change an fighting for answers for tim my brother an best friend. Today wasn’t a good day but won’t let it sway me I’ll brush myself off and try again another day

“I’m Sorry Too Tim”

Facebook can and can’t be great when overcoming the loss of a loved one, On this day sometimes will have a happy reminder a memory a photo, tagged a conversation had and they’ll put a smile on your face, Other days you may get a On thus day reminder that brings a lump too your throat a tear to your eye one wish could erase, one wish could reply too, one if went back in time you could change your attitudes an actions too. 2 years ago today Tim you left a Facebook Message for Mum on my wall saying I’m Sorry and what you we’re Sorry for you weren’t entirely to blame it was Nanna an Grandads Anniversary do you we’re so excited about also very anxious about you we’re struggling with grips of your demons with Mental Health, battling recovery finding your feet. Me, Jay Nat an Robynn holding you at arms lengths constantly judging you stereotyping you we’re probably guilty of been a bit cold, standoffish we were more concerned Nanna an Grandad had a great do than checking you we’re ok. You we’re been bought drink after drink we should have told you Tim enough we didn’t we assumed you’ld been on something not just the drink., I should have remembered alcohol can counteract medications your own and how you were that day was a result of that and not stereotyped you for being on something as it’s only since your death we’d been made aware you were drug free had been a good 10 months so on this day 2 years ago you weren’t on something and when u got loud an Merry with the drink we should have stayed, ensured you got home but we didn’t we left when Nanna an Grandad did you stayed with family an one of neighbours of mum an Nanna’s street they got you drink after drink took you on to another pub somehow u ended up outside mums caused some disruption with your loudness somehow got bundled back into a taxi home you must have gone on fb said I’m sorry Mum on my fb you knew she’d see it their or I’d comment but I sadly didn’t I was stewing with you, I’d judged you assumed you at fault questioned how many more chances we should give an like a child I ignored you didn’t reply an today your on this day post came up an it cut me up because didn’t thing what made harder see was we’d had a meeting with the NHS they’d took into consideration that you we’re off substances an we’re going acknowledge in your report we asked also that staff attitudes that were stigmatising towards those with both mental health and substance misuse be addressed I.E Judgement Free Care because we owed it to you that changed also it was to recognise that you wasn’t the person who’d been wrote off and should have been supported an it recognised the efforts of your recovery journey so Today’s On This Day Today I too was guilty of that behaviour an stereotyped you unfairly I should have stepped up, stepped in cared for your wellbeing not judged or assumed anything about your behaviour should have got u come back to Bradford stayed over a Chinese and you’ld not have had to felt apologise as you’ld have been with us as that event would never of happened outside Mum’s. We’ve a still a long way in finding out the answers why To failings in your care and things be changed but glad today we made one small step they recognised you weren’t on drugs and hadn’t be for awhile I hope in heaven it goes towards me saying Tim I’m Sorry Too and I wish could turn back the clock but know what know now and changed the course of your future thought for you as much do now, believed in you better and pushed for better treatment an care challenged not just professionals towards you but ours too and gave you the love and care you so desperately needed and made you feel worthy and built you up if done that you wouldn’t have felt in end way you did an you wouldn’t have done what you did on that fateful day on the 26th August an you’ld still be here and so Tim Im sorry I too made you feel way did an wish I didn’t have unfairly judged you because you Tim you never did that and in when I too had my own blips you never judged or shunned or stereotyped me you did what we should have done we should have looked out better for you maybe on this day today next year am optimistic we’ll get the answers, lessons will have been learned an my sorry back to you I’ll feel able write but for now I’ll share the comment on my blog an say Tim I’m Sorry Too an I love you always and 4 eva and you know saturdays an extra hard day 4 me an so I hope u can give my princess a kiss and both be with me in spirit x

Expert by Experience, patient leader do we really make a difference

Do patient leaders, experts by experience really make a difference are we really valued or are we just another resource a tick box they can fill in completed on an equality check monitoring form. In May 2011 I had my own transformation my year of recovery I came of quite a lot of antipsychotic meds, stopped been zombified and learnt to feel emotion. I took control of my conditions I come to understand my head was not broken it was coming to terms with things I’d faced childhood abuse, losing a child born stillborn I got involved with supporting local an national mental health based charities an became a health champion, I spoke at NHS England an Kings Fund Events a top professor once quoted something I’d said today we’ve heard the word baby steps and the impact on recovery an tackling health inequalities an that with work they were doing they’d taken theirs an we’re then gonna take their steps, with Kings fund I challenged that people that volunteer are not exploited it’s our choice to do we have our own reasons for doing so, but doing none of those things mattered when I had my son I was still as seen as the person who’ll once had chronic an enduring mental health conditions an was sadly detained to the maternity department an risk assessed to prove I wasn’t mentally unwell anymore or a potential risk to my child. My brother Tim he became mentally unwell I knew the system was once were I was held was once were I was broken but too thought recovered from and I tried fight for his needs, fight for him get support begged for rehab for him, when in court in an unfit state tried ringing around finding him somewhere that could support him but failed an he did a short stint in prison when came out tried to get him help then too sadly believed services had changed but sadly I learned lives harsh realities they hadn’t an systemic failures ultimately led to my brother’s death again I’ve come out fighting trying get lessons from his death be learned from but I’m not an expert by experience or patient leader nor service User or Carer I’m someone’s sister, I’m the sister of someone who died too soon who had so much to give, to offer a live worth saving, I knock know on the doors of places not because I profess to be an expert or leader or voice for the vulnerable but be the voice of someone who wasn’t heard that someone were lessons could be learned from his death too could save lives but sadly his voice his story is one people not ready or hear or address because substance misuse, mental health an Deaths in community are not priority or high up on any radar or agenda an no mo or head of state interested in because not something they can use to boost their egos an popularity and so I sit and ask myself are we really valued and if are then why is it that still get treated as person once was, in kid gloves, their their your story was inspiring one need be heard but yet no one takes chance to work together with you to create new ways of working, explore and fix the systemic failures, get you involved working in the areas we’re you could be utilised make a difference but then I remember I was just someone who was once labelised ive dropped it but it still be expected elsewhere, I was just someone’s sister so not a professional or expert. I’ve also come realised professionals high up still have to fight same fights we do and from Twitter these last few weeks Psychiatry an pschology will always be at odds , service users will always have fight for their rights and at times we’ll even be against each other for services to want help me it’s either from a Dx point or know understand my traumas what about plain an simple what can we do katie, Do we really as patient leaders or experts by experience make that much difference because sitting back these last few weeks and questioning I question we don’t we’re just another useable source or commodity tomorrow it will be a different bus Health and social care go journey on an will be left fighting that little bit more so what do u need do have that voice equally valued the live experiences trually grasped harnessed an sadly learned from has true coproduction been established or is it all really different stages of involvement been dressed up but the moment question I ask myself did I make a difference when I started my original objective to get change and sadly I did not because I know mourn my brother, my best friend an still fighting for change but their will come a day I’ll one day say enough is enough and that will be day when realise equality an valued working together in partnership dosent happen as it is still very much a pipe dream.

Finding a way saying goodbye losing my brother to a preventable suicide

I lost my brother to a preventable suicide he fell through the cracks systemic failures by the trust an social care team under and the supported housing team were he lived. It’s the worst way to lose someone you can never prepare for, comprehend an understand why. I lost a baby born still born in 2002 I knew she was to be born stillborn due to severe spina bifida an hydrocephalus I knew as she took her last breath I’d hold her in my arms I’d kiss her on the head and I’d say goodbye, I lost my Grandad back in February 2017 I called in on the Morning of the Day he died to the hospital the Doctor told me that day when my Nanna came in they’d be stopping his medicine, taking his oxygen away he was getting put on an end of life Pathway, I went up to my mums saw my nanna an held her told her prepare for worst, I went to lighthouse academy my friends held me up, prayed with me I was preparing say goodbye. That night I went back to the hospital treatment had been stopped, as many family members as could were contacted, notified mad dashes to the hospital, he was surrounded by family held he was not in pain nor alone I got to say goodbye even though I wasn’t ready. Nothing can prepare you when you lose a loved one to Suicide because you can’t see it coming, you don’t expect if you knew or had a chance you’ld do everything in your power to stop from happening. This week I read in our legal teams argument for Article 2 systemic failings led to the events of my brother’s preventable suicide , I read that my brother had already passed when the paramedics got too him and probably had been a no of hours it breaks my heart to know he was lost, alone an in his final hours an until found had died that way. I wasn’t their to hold him, my mum didn’t get hold him even though an adult was her baby she did didn’t get that chance like I did with my baby somehow prepare an be their and like with grandad we knew we all surrounded wrapped round him he’ll have felt an known was loved I hate the feeling that losing my brother to a preventable suicide has done I hate knowing he may have felt unloved, unworthy, uncared for because he was. Losing a loved one to suicide is not only their lives lost but also part of you, your family dies too it feels strange, unnatural, not right, it’s broken, fractured, damaged your heart, the heart of your family dies too you get swamped into a dark hole, dark skies descend over all you know, life, joy gets zapped from you. I hate that I didn’t know, didn’t get chance stop, didnt get hold my hand out pull him back, I hate that I didn’t get say goodbye I hate that I don’t get angry at him, I hate that I can’t ask him why, I hate that I can’t bring myself to hate those who failed him, I hate I don’t have an axe to grind I hate that I want to give them a chance to learn lessons from his death I hate it’s been me, my family who held out that olive branch and I hate that they’re reluctant too take I hate that I can’t hate them want give them a chance I don’t understand why because they robbed me of my brother, my best friend , I want scream, yell call them murderers because of their systemic failings but I can’t because I know he deserves more, I know I’ve to give those a chance who failed him, I’ve to fight the legal system for article 2 to make his life matter, his memory, his life be remembered, he be remembered as someone who deserved help, be supported, cared for, a life worth saving and him not be just another life sadly lost to suicide, him not be a statitistic because he was worth more than that. Losing a loved one sadly to a preventable suicide flips your world upside down an know all can do is try make sense off and fit the jigsaw puzzle pieces together that led to that day to understand why and then with that completed puzzle find a way grieve, mourn say goodbye an try prevent someone else from sadly taking their live, give those that failed ideas to come up with pathways, measures to build safety nets to try ensure dosent happen again, I don’t have anyone can go to that can talk to about so I share my feelings here in my blog I know people struggle to talk to you about, ask how help, I know because I struggle with too. I hope that people reading who are in same place my brother was would contact me so I can help you so you don’t do what my brother did as you are worth more than that, for those that have lost a loved one to suicide to feel free contact me you are not alone it may feel it but I know the pain you feeling I feel it too, to Services, councils, NHS trusts social care providers that want make a difference to people affected by addiction, mental health and homelessness and put mental health on their patient safety strategies or looking at suicide prevention of people society turns their back on we’re culture around people with combined needs or are seen as unsafeable or attitudes around personality disorders needs challenging or your pathways not inclusive your not getting everyone on one or you need improve your community contact me if you genuinely want learn knock on my door because like I said lives like my brother’s matter let’s work together an make a difference I can’t bring him back but his memory, story can help save life’s.

Depression

Depression is horrible it’s a debilitating disease that squeases the life out of you keeps you trapped in the darkest places of your mind, takes the spirit an life out of everyday moments, in extreme cases murders those you love forces an pushes them into doing something stupid wreckless as they fight try find away out, Depression is like a prison sentence when things not too bad you get time out from like good behaviour but then smack something happens your hurled back into that darkened cell in the back of your head trapped , surrounded engulfed by misery, pain, desperation, inability cope, intense anger as you struggle and fight through. Depression isn’t just an invisible one but it’s a lonely one too people can’t see depression nor do people want or try see. People don’t spot when friends or family disappear become distant and you drop of the radar don’t stop by and ask are you ok, People don’t see past the charade the pretence that everything’s ok , people don’t see the bags under your eyes , don’t see the pain an fatique of the weight of the world crushing down on you theirs no hand of support their to help you up, no one their to lighten the load, Depression is a tormentor abuser it plays with your mind construes your thoughts makes you paranoid throws you into a spin cycle of thoughts that take over an drain you and drench’s you. Depression people don’t see nor understand people don’t get depressed your expected snap out of, move on so you pretend , you act you paint a fake picture alls ok still whilst slowly fading away into the distance life stopping for you but continually moves forwards for others you stumble n trip and sink trying keep up and I understand now why some give up because it’s tough it can get too much to keep on battling, keep on fighting, keep on trying for me I have no choice try battle an fight through because depression to is a curse it dosent disappear when you go you wherever maybe, maybe free but those you leave behind they struggle see, understand carry the weight off and depression sneakily sneaks in whilst their vulnerable and off guard it’s how it’s snuck in for me this time round pain and grief and anger at losing a loved one to a preventable suicide shrouded and engulfed me and has me trapped and I wouldn’t want pass that curse on so I’ll battle an fight with it I’ve beat it once I’ll try beat it once more the child snoozing next to me oblivious am awake at daft o’clock in the morning needs me to he’s to young to understand and see but to a point knows his Mummy’s been sad and when she’s upset thinks is his fault an asks Mummy are you my friend, the guilt of having depression then engulfs you don’t want your child seeing or sensing or feeling that so when they can’t see you try process an unravel the pain your feeling and untangle the mess inside your head be good have a pause button take a rest an break from but it’s depression it dosent make life easy. I can choose to live in hope though and hope I find away fight through and that I break through the prison of can get a hold off an my life back on track, can try find solutions, plans break through the core that’s keeping me trapped only you that is trapped by depression can break free from because people don’t see those chains wrapped round you an can’t pass you the key to release you from to all those that are battling with though we see and hopefully by speaking about people will start to see an start to help remove the chains that have kept us held and dragged back but until then know you are not alone we all at some point or time wrestle with an battle with an so you are not alone in your fight with x x x x x

#NHS #LearningFromDeaths Realising we are not alone in our Fight For Tim.

On Tuesday the 31st October me and mum we went down to London to attend an NHS event around Learning from Deaths we were attending both days of the conference on the Wednesday with families and on the Thursday with professionals. I was apprehensive about what to expect, apprehensive could I hold my emotions in could I remain calm and could I get the professionals to Listen to understand how they treat my mum at her most vulnerable an in the rawest moment of her Losing Tim they had a duty of care to her to support, to reassure, to be open with her to give her the answers why to why Tim’s death was not prevented when so many Times both he an mum and us as a family reached out for help. Most importantly she wanted be involved in that process of finding out Why, to understand, to input into findings an say what could have be done differently she’s felt she owed that to Tim and she’s wanted do so no other parent had to go through what she was going through. When we first lost Tim we did not blame anyone, want to hold any person or organisation to account nor did we want to go down the Complaints Procedure. But it’s been the way that things were dealt with, how things were handled that led us have to do that, Other the last 2 days it’s been a real eye opener to me I realised that me and mum are not alone and that other families had received equally shocking treatment as us and some were 12, 18, 24 years later still fighting for answers fighting for change for answers to those people you are trually remarkable especially Robbie Powell’s parents and Ann Fighting For answers For her Mum Elsie and Josephine OcLoo your strength, your character, your determination and your resilience I admire because you haven’t give up, you’ve been shockingly treat you’ve not been able mourn, grief, not only have you lost loved ones you’ve lost parts of your lives but you still keep trying to fight for answers an Too still willing be equal partners and work towards wanting the Lesson’s be Learned and it saddens me that the door has not been open for you to do that and that still your not Listened to I hope an I’ll pray one day that happen’s. Melanie Leahy I loved your feistiness at times you were quite but when spoke you spoke with grit, with fight, with spirit an charm an when spoke you hit points home and I hope that you were Listened to I hope promises made to you are followed through with, Angela May’s I thank you for in the workshop we were in telling the professionals why are you not answering her question “what are the barriers” and kicking them up the backside. Other the last 2 days you all have an like include Fiona Bell and Louise Johnstone you have all shown us love, support, compassion an advice on what to do in our Fight For Tim an you showed us we are not Alone in our Fight, Our Stories are Different but still equally same as many other Families their we were shut out at our most vulnerable an not given the oppurtunity to become an important part and be involved in the investigation process and as loved ones you should have been granted that, Joanne ended the day after sharing Jasmine’s story and how the impact of her not been Listened to in the beginning has then been the major influencer to her still not getting the answers but she too had passion an optisim that “Where their is a Willingness their is a Way”. On Wednesday all the families they had that passion, that fire that drive an that Willingness they were not just subjective they were their to bang on that door an To have it opened and too share so Learning could be made and wished on the Thursday more families could have stayed so that the professionals could not just have seen what we’d all compiled an discussed together but felt the spirit that drive and that passion. Because sadly Thursday the atmosphere did feel different it sadly felt cold families questioned would things change would all the families be listened to, would in years come Lessons actually Be Learned or would all the Families be back here again, I know that the professionals that were their were their more to be objective to Learn and not to share but I kinda feel they may have missed out on sharing in that passion that come from Wednesday as Passion is sadly something you can not Learn and if you do not have that passion or share in you may struggle in your desire to change. Olivia Bentley tweeted Last night it was now a huge Job on her shoulder’s it should not be a huge Job it should be a simple and easy one but at the same time I respected her and everyone involved in the Learning from Deaths Board because they did all show care, compassion, spirit, grit and determination they know what needs to happen they have that Willingness to Find a Way they’ve opened that door for them and all the families I hope now Services please Learn because you should not have keep Learning From and also support them, get involved with and change and don’t make a huge Job it shouldn’t have to be but they’ve given you that key to now open the door it’s now time you lift an take away that load and for all the families it’s time Listen an Change.

Other the next few day’s me and mum would reflect on our Fight For Answers For Tim look through his notes check all their, adequate ensure things we want seen our Legal Team an all Parties seen, Well check and read the serious incident report that not involved in and then well maybe look contact the person conducting and if not compiled and published say “Lets start the process and report again but this time you open the door make us equal partners and involve us in every stage even in all the meetings because that’s us wanting be involved that’s us putting our trust into that it’s been done right that’s us showing you we want change but now it’s up to Leeds and West Yorks Primary Foundation Trust to do that so please in Learning Lesson’s since not their these last two days open the door to us make us equal partners let’s Find the answers for Tim Together let’s Learn the Lessons that need be Learned together and then Let us then together make changes, recommendations and structures an process’s in place and that deaths like my brothers are ones that not are Deaths to be Learned from but ones that Prevent future Deaths please do that for me, for my mum but especially do it for my Brother Tim.