Consultants, consulting and consultations: Pembridge Hospice and the end of locally provided end of life care?

Last Monday at Kensington Town Hall, there was a special meeting of the RBKC Adult Social Care and Health Select Committee regarding the future of provision of end of life care.

Background

Pembridge Hospice is based ar St Charles Hospital, just off Ladbroke Grove. providing care for people with life limiting conditions.

The Hospice provides:

– A 24/7 advice line staffed by a registered nurse and medical consultant

– Day Hospice and Outpatients services: Mental health, social isolation, peer to peer support, befriend, treatment (bisphosphonate), specialist pain anaesthetist clinic, wider support and complimentary therapies.

– Multi disciplinary Community Palliative Care Team: Advice and support for people in their homes enabling 30 people a month to die in their preferred place.

Pembridge Hospice did provide an Inpatient Unit with 13 beds, 24 hour care and treatment for patients who require continual assessment, respite care and symptom control. The focus of the unit had been to support patients who wish to be cared for and to die in a safe space close to home.

But in October 2018, the palliatve care consultant there resigned and inpatient admissions were suspended. Central London Community Healthcare trust had said that they were unable to find a suitable replacement for the consultant. The unit remains closed to this day.

The following month a review of palliative care services by independent consultant (of PJH4 Consulting) and former Director of Nursing at St Christopher’s Hospice, Penny Hansford was commissioned by Central London CCG.

The review went on to to recommend for the Pembridge Hospice inpatient unit to be decommissioned with the money being used for hospice care eleswhere and for enhanced community care provision. But the review also recommended a reduction in specialist palliative care beds. Read it here:

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.centrallondonccg.nhs.uk/media/95628/1-PJH4-Independent-review-palliative-care_Executive-summary.pdf&ved=2ahUKEwivqqvjrKTnAhUElFwKHXvAATgQFjAAegQIARAF&usg=AOvVaw1uaPNMJRCDkcRupkCX0bAR

Marie Curie UK in their blog said this in 2015: https://www.mariecurie.org.uk/blog/we-need-to-remove-the-barriers-to-palliative-care-in-england/48684

The St Luke’s Hospice website last Summer said:

2018 has seen increased pressure on St Luke’s.. The recent closure of inpatient units of two neighbourimg hospice has seen an increase in the number of patients being referred to our unit and the growing number of patients with more complex conditions and needs has placed extra pressure on the hospice’s community services

The Hammersmith and Fulham Save Our NHS campaign says:

Claims of adequate alternative beds provision in Clapham, Harrow and St John’s Wood seem unrealistic. Policymakers quite rightly emphasise the need to improve resources, communication, coordination and speed of response to enable people who wish to die at home to do so. However this shouldn’t be at the expense of the significant minority of people with palliative care needs who wish to die in a hospice.

Already sadly not everyone who expresses a wish to die in a hospice is able to do so. Surely as a society we can agree that resourcing care of those with a life limiting illness should be a priority – and that we should resource both home and hospice services to give all our residents the best possible end of life care.

The statistics

Pembridge Hospice serves a catchment area with a poplulation of 350,000, covering parts of RBKC, LBHF, Brent and Westminster. Areas of social deprivation are concentrated in the catchment and the population of residents aged 85 or over is increasing rapidly at a rate far above the London average.

-The Pembridge Service receives between 1 and 15 referrals a day, approximately 120 referrals a month.

– is actively caring for 300+ ay any one time

– Supports on average 30 people a month to die in their preferred place, be it home or bospice

-The service overall has an average 2160 patient contacts a month split between 3 key areas: –

– Bereavement counselling: 172 per month

– Pembridge Community Palliative Care Team : 1404 per month

– Pembridge Day Hospice: 583 per month

According to CLCH, 50% of people requiring end of life care are not getting what they need.

The meeting

THINK arrived late to a very packed Small Hall.

The speakers making the presentation (referred to as “the panel” in this post) were:

Steve Barnes – Director.of St John’s Hospice

James Benson – Chief Operating Offiver, Central London Comnunity Healthcare Trust

Dr Ruth Caulkin – Palliative Medicine Consultant , Chelsea and Westminster NHS Foundation Trust

Dallas Pounds – CEO, Royal Trinity Hospice

Louise Proctor – Managing Director, West London CCG

Dr Neville Purssell – Chair of Central London CCG

Professor Catherine Urch – Divisional Director for Surgery, Cardiovascular and Cancer, Imperial College Healthcare NHS Trust

Dr Jayne Wood, Clinical Lead, The Royal Marsden Symptom Control and Palliative Care Team

Chairing the meeting was senior RBKC Conservative councillor Robert Freeman, the Vice Chair of the committee and the former chair of its predecessor the now defunct RBKC Adult Social Care and Health Scrutiny Committee.

We also noticed other RBKC councillors present – Cllr Sarah Addenbrooke (the cabinet member for Adult Social Care and Health), Cllr Malcolm Spalding, Cllr Dr Max Chauhan and Cllr Marie-Therese Rossi from the Conservatives, and Cllr Robert Atkinson, Cllr Pat Healy and Cllr Judith Blakeman from Labour.

Essentially the presentation was the panel stating their case for permanent closure of the hospice inpatient unit.

As this was not exactly what most residents attending were led to believe the meeting was about – it was billed as a public discussion and advertised by our council on social media as: “End of life care meeting: Have your say.” ” End of life care helps all those with advanced, progressive and incurable illness who are nearing the end of their life to live as well as possible until they die. Have your say on the future of end-of-life care in Kensington and Chelsea at the public meeting taking place this month” – and as Pembridge Hospice is so important to so many people here, the vast majority are unsurprisingly opposed to closure and service cuts . Many of the people attending had felt that their views had been ignored or disregarded by the NHS bosses on the panel. The atmophere at the meeting was one of justifiable anger, upset and frustration….

A resident said : “You said in your presentation that the beds are temporarily suspended. If so when will you reopen them again?”

James Benson: “This is dependent on recruiting a consultant and palliative care consultants are hard to come by”

Hammersmith and Fulham Cllr Ben Coleman, LBHF Cabinet Member for Adult Health and Social care said” The reason we’ve been given is that they can’t find a specialist consultant in Pembridge. What I don’t understand is why they can’t share consultants and if there is a shortage , why?”

Panel Member: “We do have a number of consultants at St John St Elizabeth but we do not have enough to share consultants.”

Dr Neville Purssell said that services elsewhere could be put at risk if consultants were shared and the other doctors on the panel – Dr Ruth Caulkin and Dr Jayne Wood also stated this.

We’d like to think that perhaps some of our readers may know of a consultant who could help? If so, do please get in contact with us

But we won’t hold out much hope that even solving the consultant problem would stop the closure as the panel were not open to this being a possible solution.

Dr Jayne Wood said; : “Supporting a community visiting team is much easier than supporting an inpatient unit . The community is easier because we would have GPs to support us. Otherwise we would need consultants , specialist nurses, senior nurses and junior doctors on an inpatient unit”

Aren’t many GPs pushed to support the needs of patients who require specialist care as it is?

A resident of Brent whose son spent his final days being cared for in Pembridge Hospice spoke about how despite St Charles Hospital being some distance away, that is was easily reachable by public transport for everyone. “If we had had to travel to Clapham we would have had to pitch a tent overnight something with the length of time it would take to travel there. Because the hospice was easy to get to, we were able to spend quality time with our son in his final days”.

A number of residents pointed out that it isn’t as easy to get to Clapham or St John’s Wood as it is to get to Ladbroke Grove.

Robert Freeman: “Yes, transport is an issue….. .”

Another resident “But should the NHS service here be the one that is closed give how important it is to so many people? ”

Yes, so many people were there and so many of them were understandably upset and frustrated. There was some shouting and heckling – which appeared to throw Cllr Freeman a bit and the way some of the panel responded only added fuel to the fire.

James Benson “It is not clear what the way forward is. That is the Trust position”

Well that doesn’t exactly inspire confidence in the CCLH boss, does it? Perhaps if Mr Benson spent more tine listening than speaking he might have a better idea of what to do……

This matter of a lack of joined up services came up several times:

Merril Hammer from Hammersmith and Fulham Save Our NHS: “We’re finding it difficult to get the patients’ and friends’ voice heard at this meeting. Why are the three trusts not talking together given that is the name of the game?”

Member of panel: “The way forward is to try to provide joined up services in the community – together with GPs and the voluntary sector”.

Resident: The voluntary sector is struggling to cope with the cuts that the Government has made. And NHS Property has the nerve to charge volumtary organisations rent on top of this”.

One woman said: “I don’t suppose everyone’s got terminal cancer here? I have. Pembridge is important to me for many reasons . I was diagnosed at stage 4 with a rare form of cancer. and there was no chance. I spent most of my time before being admitted to A & E at St Mary’s and it was only through a Macmillan nurse there that I finally got a referral to Pembridge. Pembridge offered so many things. We have such a strong community of people in who we can put our trust in having known us for a number of years. I could wait weeks for treatment with a GP. I do not want to want my family to have no choice but the responsibility of looking after me in my final hours – . I don’t want to have to wait all day for a nurse to turn up because I’ve had an accident – you.might not like hearing this – but there it is. The least that they could do as a dignified act would be to let us die with dignity. ”

Cllr Freeman : “Day care services will continue at Pembridge – that will not change….”.

James Benson :” We have taken the decision to try and support our colleagues in the community”

A resident :”This is a sales exercise and we’re not buying it”.

What we see is a very bleak picture for people who are financially disadvantaged and/or who receive little to no support from family and friends. And more people in our community are in that position than some might think…

A North Kensington resident spoke of supporting bis terminally ill neighbour and pointed out that not everyone is fortunate to have support in the community .” Many households in the area are single person households and many them are older people. Many local residents do not have families placed to help care for them if their familes live abroad”

Robert Freeman: “Do the speakers realise that a large percentage of households locally are single person households?”

We know of several locals who are having to provide care to neighbours and friends because the help is either being sparsely provided or not being provided at all.

All of the residents who had received care or whose familiy members from Pembridge Hospice and the service spoke positively of the care and support received there.

One Shepherds Bush resident spoke of the care provided for her terminally ill mother by Pembridge Hospice as a teenager and support afterwards:”Without the help provided to my mother and after she died, to me, I would have never have been able to go to university without the support from Pembridge I had. What about the poorer people who can’t afford it? ”

Another resident :” You’re talking about some great plan that you’re looking for or you’re waiting for. Most of the people affected don’t have the time. If someone walked in and said they’re a pallative care consultant wouldn’t that be the problem solved?”

James Benson : No because we would have to go through both CCGs”

Louise Proctor: :”We undertook an independent review. There were a series of engagement workshops. In the Autumn. Winter 2019 Kensington engagement seesions, a patients working group was set up amd that is about trying to understand this in a bit more depth”

Another resident: : “It’s not to do with trying to consult. It’s morphed into something else.”

Dallas Pounds: :What I can hear is you’re all in crisis and I hear this. This is a major opportunity of change. This the first time that the CCGs have gone round the table listening to people ”

But another resident said: “What I’m seeing here is the people here don’t have time. You have spent an hour talking and you’re not listening to people ”

Member of panel: “We are trying to have care planning at a much earlier stage – we are trying to talk about it – this is about raising the bar. Only about 35% of patients have a coordinated care plan and we are trying to change this. ”

Dr Farukh Malik: “This exercise is to organise the resources we have. Patients and their families can produce their own care plan electronically”.

Dr Malik, who is Palliative and End of Life Clinical Lead at West London CCG arrived later in the meeting. He received groans from residents for this response.

A man who is caring for his wife who is paralysed said : ” I’ve been keeping her alive by giving her injections . I am fortunate enough to be a a doctor . It can’t work unless pallative care services work hand in glove with everyday services.”

Hounslow Councillor Mel Collins sits on the North West London Joint Health Overview and Scrutiny Committee (Robert Freeman is RBKC’s representative on the committee). He said : ” When we had the presentation there were a number of points that you refused to listen to and reply to. You have missed the point. Everything has to be joined to up to work. Unless we work collaboratively together we will never reach a satisfactory conclusion.”

As for Robert Freeman, he is one RBKC Conservative councillor we normally have time for but we were rather disappointed in him at this meeting, as he had previously indicated to residents on a number of occasions that he was against the closure of the hospice beds but he did not appear to show that on Monday. Many of the residents felt that he had given the panel an easy ride . At one point, a resident who had been heckling ended up having a row with Cllr Freeman’s wife Elizabeth, who was sat a couple of seats away from us.

The meeting ran overtime amd Cllr Freeman had let the panel of bosses dominate this meeting and he had been about to close it a few times but so many people had so much to say – some had their hands up for over an hour and some did not get to speak at all – what a disgrace.

Editor’s note: Because Robert Freeman did not introduce the panel properly (the only one we recognised was Louise Proctor) we were sat at the back and couldn’t see who was speaking at certain times in the meeting, we couldn’t be entirely sure of which panel members were speaking at certain points of the meeting .

So far, the recommendations have not been accepted by Central London CCG but the indications we got are that they will accept. Cllr Freeman could have closed the meeting by asking residents for a final show of hands to show the panel (which included the chair of CLCCG) how few residents actually support this, but we doubt that would make much difference.

It is less than satisfactory that palliative care services are not equally provided (the NHS “Lottery”) but closures and cuts will not improve things; making things worse for everyone is not the solution. We have seen them making cuts in services and labelling them “improvements” to our community before and sadly others here are left having to pick up the pieces.

It appears that our community yet again, has another big battle on our hands….

Some views from people after the meeting

As the event was packed, we were sitting at the back, a number of people were understandly upset and angry and there was quite a bit of shouting, plus the acoustics in the Small Hall are poor at best, we were unable to hear everything being said so we went to speak to some people afterwards.

Social worker: “Community and voluntary services are overstretched enough as things are. This meeting should have been an opportunity to listen to local people and discuss solutions with the comnunity properly in a meaningful way but it’s been wasted”.

Paddington resident: “They (the health bosses) are people who are supposed to care. I’m disappointed and let down by them and their attitudes. It’ s shameful – what’s the point in having an NHS if they offload care of people to charities? People suffering were made to feel like they don’t matter in this meeting . It’s just a public relations exercise and a very bad one at that”

RBKC Labour Cllr Robert Atkinson: “This was supposed to be a listening meeting and the panel spent more time talking and not listening. That was because what was being said by the public did not jive with what they had already decided”.

Jim Grealy from Hammersmith and Fulham Save Our NHS : “The public is very angry. Which is why they have turned up in such large numbers and we are additionally angry because the 9 experts behind the table spoke for 1 hour initially and did not want to listen to the public views. They have already made up their mind but the public are not going to go away and accept this, they will fight this and they will win ”

Cllr Robert Freeman refused to comment, telling us that he had already had said what he had to say in the meeting.

Well, we think Robert Freeman in chairing the meeting was being rather too diplomatic towards the panel – we get what he was trying to do, he was trying to appear as impartial as possible in his role as chair. We do remind people who are understandably angry and upset however that he is not making these decisions .

Ben Coleman later gave us this response:

“While I’m delighted the NHS is planning to improve palliative and end-of-life care across Hammersmith & Fulham, Brent, Kensington & Chelsea and Westminster, I’m confused by their ‘suspension’ of inpatient admissions to Pembridge Hospice.

“They claim this is because they can’t find a palliative care specialist to run Pembridge. Yet at the meeting, they worringly refused to guarantee the hospice would reopen 24/7 even if they found someone.
“Local people want Pembridge to stay fully open while the new strategy is developed. Hammersmith & Fulham’s health and social care committee will be discussing this with the NHS next Monday
27 January –

Everyone welcome.”

Details of Monday’s meeting are here: http://democracy.lbhf.gov.uk/ieListDocuments.aspx?CId=488&MId=6681&Ver=4

Cllr Sarah Addenbrooke , RBKC Leadership Team Member for Adult Social Care and Health also later told us that she is opposed to the closure of the inpatient unit at Pembridge

Our view

The vast majority of people attending the meeting, regardless of whether they were from RBKC, Hammersmith amd Fulham, Brent , Westminster or anywhere else, were appalled that a meeting that had been billed as “Have your say” instead amounted to a sorry exercise of the NHS bosses on the panel who had clearly decided to permanently close the beds and reduce services at Pembridge Hospice having their say and pressing their points upon residents wbo were against these changes.

But for those of us from RBKC, and North Kensington in particular, we were once again reacquainted with the all too familiar sham of a CONsultation” – when those at the top making the decisions had already made them and the meeting appeared to be focused on an effort to get the residents to accept the unacceptable.

More insulting than consulting some might say, and aren’t “discussions” really supposed to involve some degree of listening?

What is also unacceptable, is not only the fact that half of residents here are not getting the care they need, but that those in charge appear to think somehow that by cutting, closing and moving services further away, that this could ever improve the situation.

With an aging population and so many single person housebolds, it appears our community will need more, not less, provision of palliative care. An already serious situation can only be made even worse by the closure of the hospice beds at St Charles. It is a pity that those in charge fail to see this, but then again, given the hefty salaries these people receive, that is a matter that they personally will never have to face – unlike so many of the residents they are supposed to be providing vital care services to.

We thank all the residents who spoke at the meeting. Many of them spoke movingly of their experiences of care received from the Hospice Service, and our blog will campaign hard against the closure of the hospice beds at St Charles Hospital. The matter of Pembridge Hospice is not just a a local issue though as this goes so much further as state-provided care (or lack of) for people with incurable conditions needs to be addressed on a national level as there are other parts of London and the UK with similar population demographics.

NHS care provision has to adapt to the needs of a changing population and we know that future generations of people requiring palliative care will be left with no choice but to be dependent on sparsely provided outreach and voluntary services, hospital stays and whatever friends and family can provide .

We also note that Penny Hansford’s former workplace St Christopher’s Hospice provides palliative care training; it’s a pity she did not recommend that more consultants undergo this.

But it seems that those in charge have already taken the decision to to move away from providing 24 hour palliative care, regardless of the fact that more of us will likely require it. We believe they need to seriously reconsider .

Our readers can support Hammersmith and Fulham Save Our NHS and the campaign to save the Hospice by getting in touch at scxandh@gmail.com

Grenfell: 31 months tomorrow (yet some at RBKC still fail to understand)

Tomorrow will be exactly 31 months since Grenfell. We ask our readers to please, if they can, to.join us in the Silent Walk. The Walk will be gathering at 6pm outside Notting Hill Methodist Church, Lancaster Road, W11 4AH.

Many North Kensington residents are feeling fragile right now .The 14th of every month is always a very difficult time for us but at the weekend the Grenfell Projects Fund “decision day’ event took place which turned out to be a rather stressful and difficult experience for some as the event was apparently very chaotic, disorganised and there were numerous technical problems. Residents voted on which projects would be allocated £200K of funds to help our community. We send our best wishes to those who were successful and also to everyone who took part.

For those who couldn’t make the event, here are more details and some information on the event and on the projects that had successful outcomes on the day:

https://www.rbkc.gov.uk/north-kensington-community-vote-award-local-projects-%C2%A3200k

https://www.rbkc.gov.uk/grenfell-response-and-recovery/our-progress-grenfell-recovery/grenfell-projects-fund

Also tomorrow there will be a Grenfell Tower Inquiry drop in session for local residents taking place also at Notting Hill Methodist Church from 4pm to 6:30pm. The Inquiry website states that:

“The Grenfell Tower Inquiry wants to hear from local residents who have information about the emergency relief response in the immediate aftermath of the fire. Members of the team looking at the aftermath of the fire will be at the next Inquiry drop-in to listen to local residents and take questions. If you are unable to attend, then please make contact using the details below. We can then arrange for individuals or small groups to speak with a member of the team at either a separate meeting or by phone.

Email:contact@grenfelltowerinquiry.org.uk

Phone: 020 7842 3583.

The Inquiry will continue to hold regular drop-ins, which in February will be held at the Space, 214 Freston Road W10 6TT

Some residents will be reliving memories of the fire and the aftermath and this is going to be a very traumatising experience for many people here tomorrow. Our thoughts are with all affected.

But still some at Kensington Town Hall do not understand.

We did ask RBKC previously to please not conduct meetings at the same time as the Silent Walk, as have a numher of other residents, but we are sorry to say that the council have not listened to our requests and have scheduled a meeting of the Planning Committee at around the same time as the Silent Walk tomorrow.

Look, we understand that the issues of the meeting are regarding other parts of the borough outside North Kensington (Sloane Avenue and Pavilion Road in this case) , and we are of course aware that many other local issues go on regardless of the date, and do not expect everything else to grind to a halt but it is in our opinion, very disrespectful of RBKC to go ahead with conducting this meeting at the same time as the Silent Walk.

Just in case some at the council wrongly assume that planning matters in other parts of the borough are not our concern somehow, we will also remind them that every decision taken at the Town Hall has an impact and also that our blog has connections with every ward in RBKC. We would ordinarily be going to the planning committee if it were on any other day and while this meeting may not be Grenfell-related it is nonetheless the same local authority in charge and we are all residents here.

Yet we have to keep on reminding some people as this does not appear to have sunk into some certain mindsets – and that was and very clearly still is, part of the problem with our council.

Some RBKC councillors do keep saying “Grenfell is our number one priority” but they are not exactly behaving like it is if they are not raising any objections to a meeting going ahead at this time.

Surely as RBKC were and are, the borough responsible for Grenfell and the surrounding community, we would hope that the very least they could do would be to please show some compassion and respect on the 14th of every month?

That is the hope anyway and many traumatised residents here are holding on to hope – the hope of justice for the 72, the bereaved and the survivors, plus the hope of positive social change and a brighter future for North Kensington.

Many of us live in hope but it really shouldn’t be too much to hope that our local authority just at least tries to show us some respect and kindness of thought.

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Incompetence, indifference and negligence: No housing support from RBKC

THINK are back after a short break, but this has been no holiday for us. After years of less than adequate housing, being a victim of violence from antisocial neighbours and STILL no action taken by RBKC to move us, we are left with little choice but to publicise our own experiences of the failures of this council with regards to our social housing.

See this:

https://thisisnorthkensington.wordpress.com/2019/12/15/think-vs-dizzy-lizzy/

And this:

https://thisisnorthkensington.wordpress.com/2019/12/18/a-delusional-director-at-the-sharpe-end-wendolene-just-doesnt-get-it/

But our awful experiences are sadly far from the only ones and disgraceful RBKC doesn’t even bother to tell tenants who the housing officers responsible for management of their homes are. It appears that communications from this council are more in the style of PR rather than being of any real help to residents in need.

Furthermore, they continuously fail tenants by not prioritising housing support, thus ensuring they are at most times, completely in the dark with regards to tenants’ needs.

It begs belief that they do not give tenants any (unless they are very visibly unable to look after themselves) , housing support officer. All tenants are allocated a housing officer and a rent officer by the way, though very few know who they are, let alone have any contact details for them.

No wonder they do not have updated details of residents meaning that the needs and wellbeing of many of those with physical and/or mental health issues and/or disabilities are not being recognised. This also means that housing points are not being sufficiently awarded and some are being housed inadequately as a result.

This council has failed its social housing residents over many years and is still failing. The TMO may supposedly be gone, but the imcompetence, indifference and negligence lives on.

We know that Kim Taylor-Smith reads our blog, so we say to him that it is time for reform of the council’s housing management structure, for all tenants to be allocated a “housing team” (consisting of a housing officer, a rent officer, a housing support/needs officer and a caretaker or maintenance officer (depending on type of property) – and all residents should be regularly issued with their contact details. That would at least be something of a start.

Little has actually changed on the ground since the TMO days and while Kim Taylor-Smith and Doug Goldring are making positive noises here and there , there appears to be not much in the way of actual real positive change being made.

But as for us, we sometimes wonder if we will only exit our “home” or rather, slum, in a bodybag – just like our former upstairs neighbour. This, by the way, is around the corner from Grenfell; just exactly how bad do things have to get?

Happy New Year, new decade and all that (and why our blog is taking a break)

We wish our readers a very Happy New Year and we hope all had a good Christmas.

Following what has truly been the “Winter of our discontent” – well for us and many North Kensington residents anyway – our blog is taking a break from things.

2019 has actually been a very difficult year for us (we’ll just briefly mention election results, Grenfell, scrutiny and housing here) finishing with fallouts aplenty – sometimes things can just get all too much.

THINKers are also personally dealing with a lot on our plates right now and we don’t mean festive leftovers .

We are feeling drained and worn down from everything and there is no point in us going on autopilot and blogging just for the sake of it.

There are a lot of issues we are concerned with and perhaps we really ought to be to be doing more , but maybe this is a good time for others to become more involved in local issues?

THINK are not sure when or even if our blog will be back, but if not, we’d like to thank our friends, supporters and all the many incredible campaigners who have inspired us over the past few years.

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