Letterbreen and Mullaghdun Partnership (LAMP Fermanagh) & Members of the Ad Hoc Hospital Group C/o Lenaghran Gardrum Road Letterbreen Co Fermanagh BT9 9BP

16th June 2020

Permanent Secretary and HSC Chief Executive Department of Health Castle Buildings Upper Newtownards Road BELFAST BT4 3SQ

Your ref:RP5373

Dear Mr Pengelly,

With reference to your letter to Fermanagh Omagh District Council regarding ‘Rebuilding HSC Services’.

Firstly, we feel your letter of the 9th of June 2020 requiring a response by 16th of June did not afford our Councillors appropriate time to scrutinise your proposals, understand your plan which lacked detail, and the implications of what you propose. We understand many of them expressed concerns and they agreed to note and monitor the situation.

We are writing to you as you did not write to us a community group in West Fermanagh, who, due to our location are arguably one of the most vulnerable groups in NI.

When you wrote your forward to Personal and Public Involvement Consultation Scheme in 2015 you referred to the Health and Social Care (Reform) Act () 2009 (the Reform Act) You said that the act also placed a statutory obligation on health and social care (HSC) organisations and the Department of Health, Social Services and Public Safety (the Department) to involve the public and consult with them in relation to their health and social care. Under Section 19, each HSC organisation and the Department must prepare a consultation scheme. You said that PPI is about “putting the patient first”, enhancing patient choice, meeting demands and expectations, and ensuring views are heard and listened to. Effective PPI can really change things for people who use our health and social care services, both in their experience of the service they receive and, in the quality, and safety of their care. According to what you said about PPI and according to what Bengoa said about Co Production being made mandatory, we feel we and every other community should also have been informed about the proposals you outline in your letter to the Council, we are therefore responding to your request for soundings.

We are extremely concerned and worried by your letter to our council.

We acknowledge the serious challenges before the Department of Health many of which pre-existed this COVID-19 crisis. We in Fermanagh are acutely aware of the challenges because we suffer the worst impacts of all the challenges as we also carry the highest burden of inequity in health care, time, distance, travel costs, lost time of work, and physical and mental suffering of increasing inequality in health care provision. This is translating into rising rates of cancer, and falling life expectancy in women from 83 to 79 in the last 4 years. We are really feeling the pain, suffering and cost of the situation and we know changes are needed but we feel strongly what is proposed is not the appropriate way to proceed and puts communities like ours at increase risk of further disadvantage and inequality.

The issues your Department are planning to deal with are of vital importance to communities in Fermanagh. We are very concerned about your proposed plan to take control over the situation in the manner in which you propose. The issues you plan to take control over are a matter of life or death for our community. We are extremely concerned about your proposed plan. Such serious health provision issues must be subject to proper structured public consultation, genuine listening and take public opinion and serious inequalities and needs which are our reality in Fermanagh into account. Genuine Co production must be front and centre to ensure the future is better than the past. We cannot afford to get this wrong at this stage. Things are too difficult to make mistakes now. We urge you to share this responsibility by sharing decision making fairly and according to democracy, human rights and rural needs legalisation.

Equity in Health Care – Must be Government policy and fundamental in decision making – we need to make sure this happens as part of an open and transparent Co Production process.

Multiple layers of Hidden Deprivation in Fermanagh. The particular profile of our community in Fermanagh must be considered as the growing inequalities for our community cannot be ignored. There must be investment and development plans for SWAH to meet the realities and needs of the 60,000 isolated people in Fermanagh and surrounding areas to often ignored in favour of development of services in Altnagelvin. Plans must take into account the age profile of the population in Fermanagh, the oldest and most dispersed in Northern Ireland. We cannot even get a fair share of junior doctors allocated to SWAH. A lot of change is needed and no community should be abandoned – all lives matter even if they are rural lives. We are not worth less. Fermanagh has many hidden layers of deprivation, and is in a unique situation so often silently enduring cumulative disadvantage. Somehow many people here seem to think their lives are some how worth less and they should somehow accept they matter less because they live in Fermanagh. Decades of violence and trauma in a border community has left many afraid to speak up. When Fermanagh lost its Council it’s unique needs and geographic access challenges bisected by , somehow got lost and it’s voice was diluted. The reality is Fermanagh’s 60,000 people have the lowest wages in NI and one of the highest rates of zero hours contracts. South West Carers found we travel 1 million miles often to Derry for health care, an accountant estimated the cost of this lost time, days off for carers, cost of travel etc and a figure of £9 million a year emerged as the burden on the Fermanagh community. The community with the lowest wages in NI. Moving services out of Fermanagh simply pushed the costs, suffering and losses onto our community. So we are here in the rural west with it’s highest level of poverty at 23%, 81% of people in Fermanagh have below the average access to services, 90% of farming families struggle in less favoured areas, with the highest level of unfit housing in NI, the most isolated and rurally dispersed community, with the highest level of over 65s living below the poverty matrix, with the worst public transport in NI, (especially to hospitals elsewhere), with most families in Fermanagh needing to buy and maintain two cars due to rural isolation. We have double the average rate of suicide in Enniskillen, and the third highest rate of of serious mental illness in NI, and the second highest rate of dementia in NI. Still this did not stop the WHSCT taking £8 million a year from our disabled and their carers – every year over an estimated 20 years, taking from and abandoning the most vulnerable, how can you expect us to trust the same civil servants now to fairly allocate services and staff here? Despite desperate pleas to Pathfinder to tell the truth about their agenda, they would not until after their PR event attended by Bengoa. They ignored many requests to investigate the 60% rise in lung cancer in Fermanagh. They could tell us it was happening but they would not work with their own appointed so called ‘Experts by Experience’ in co-production to find out why. The experts by experience they asked represent their communities but then demanded they sign gagging orders. Neither do we know why we have a 30% increase in cancer in under 75 yrs. No wonder we are seeing one of the fastest falling, if not the fastest falling life expectancies for women in NI – last year the figures showed women here were losing a year of life expectancy every year for the last for year from 83 to 79. This is according to Dr Declan Bradley is an increase in Preventable mortality.But no one can tell us how to prevent it so our women live a normal life expectancy. Our local cardiologist spoke at the invitation only Pathfinder PR event she said that Fermanagh had double the rates of disease than patients she saw in London. She is recorded as stating that Fermanagh people are going to experience a Tsunami of disease in the coming decades with a trebling of dementia, and a doubling of stroke and cancer rates. This is the area of the lowest levels of GPs in all NI – we need at least 12 more GPs now and our A and E needs to get the support it needs to deal with the failure to plan for needs at primary care level. We have only half the social workers we need so our most vulnerable do not get continuity of care or assessments of needs. A shortage of pharmacists mean accessible basics in isolated areas are also under threat of closure. Many families experience all of these challenges in cumulative way, on top of the high levels of waiting lists – we experience this as- a long time and far away. Distance decay is real and costs lives, as people do not attend when they need to. Mental health services as practically non-existent for many as people have to wait months for assessment and then months more for treatment, even if they are acutely distressed and experiencing suicidal thoughts. Alternatives options for support are often based in Belfast and not available this far west of the Bann. The death rate due to alcohol in deprived areas of Fermanagh is 70% higher than average. The death rate from smoking is falling in NI but rising in Erne West and Erne East. Our disabled are too often abandoned, hidden needs barely visible, even Dr Bradley struggled to get information, but for the figure of Fermanagh having the highest rate of wheel chair adaptations in NI. Our carers are overworked, under trained and under paid making their vital work undervalued.

Civil servants cannot design services to solve these challenges without the community in genuine co-production. This is our health, this is our challenge, these are our lives. To remove democracy, public consultation and our elected representatives from designing our health provision is wholly morally, ethically and legally wrong. We urgently need genuine co production to understand what is going wrong here and then a plan to develop equity of staff and services at SWAH to start to address discrimination against our rural community. https://abridgetoofartobefairtofermanagh.wordpress.com/fermanaghs-unique- needs/

There are ways to develop services fairly so our vulnerable interconnected acute services which are so co dependant are sustained for the future.

Any review of required clinical pathways at a regional level must ensure that patient populations are not disadvantaged or discriminated against consequent to rurality. https://abridgetoofartobefairtofermanagh.wordpress.com/reconfiguring- services/

Removing services from SWAH will not save money –our care must be funded somewhere, but it will pass costs onto a vulnerable community, depriving us of our health and wellbeing and lowering our life expectancy, just so others can have convenience of accessible care at the cost of our lives. This is not acceptable.

Distance decay is real for Fermanagh.

Distance decay is ‘where there is a decreasing rate of service use with increasing distance from the source of health care’3. Studies have shown that the closer the service the more likely it will be used 4. Rural and remote populations are therefore affected by distance decay 5. Distance decay is a reflection of utilisation rates which cannot be taken as a direct proxy for health care need. Distance decay is a cause for concern since it leads to delayed intervention and treatment and hence poorer health outcomes become more likely https://abridgetoofartobefairtofermanagh.files.wordpress.com/2019/07/di stance-decay-factsheet.pdf

Brexit

Post Brexit Fermanagh is the most exposed community in the UK as our location leaves us subject to both the most severe economic and social impacts of Brexit as we have the longest length of EU border surrounding our community. This adds another layer of complex disadvantage for our community which causes acute concern.

Do not force us into Private Health care. It is even more important to people in Fermanagh that our NHS, we paid our taxes to fund, meets our needs, rather than forcing us into increased use of private hospital care which is 150km away from our community. Low wages and other hidden cumulative layers of deprivation will result in our most vulnerable being further disadvantaged as those in most need will not be able to afford the private care option and it will be too expensive to access it. Who controls civil servants is an important aspect to monitor as demonstrated by RHI developments. We are well aware from efforts to protect our environment from the fossil fuel industry that civil servants can be subject to intense lobbying by private business interests. The privatisation of care homes needs to be reversed. Recently the private care homes were more reluctant to pay for PPE needed during COVID crisis and were more reliant on community support initiatives. The priority of private profit can lead to inadequate staffing levels and resources putting lives at risk. The government have abdicated its responsibility for care of our most vulnerable leaving them vulnerable to being used as a commodity for private profit. Many Fermanagh people have already been forced to seek private health care due to long waiting lists. It is vital that we have accessible services available to all of us within accessible travel time. Failing to so do puts an increased burden on the community of costs and suffering. It may appear to save money by centralising away from Fermanagh but it simply passes the costs, time, travel and suffering onto our community. This creates huge inequality for Fermanagh. We are seeing increased use of privatised supply and ambulance services also it is important to realise that the state pays business for this building in profits for private business the NHS cannot afford. We need better controls on consultant time spent in private clinics rather than in NHS dealing with huge waiting lists. All of this needs oversight and transparency not civil servants making decisions on their own. We as a community simply have different values and interests and experiences and this is our health care for our community. We must be part of decision making when we supposedly live in a democracy. We have seen in the past NI being used as the first trial for new UK plans -we will not be the first place privatisation of the NHS begins.

Do not pre judge SWAH as Pathfinder did.

Any Hospital can be made sustainable, where there is a will to treat it with equity, but the WHSCT will not treat SWAH with equity and develop it as it could and should be developed.

In reality SWAH has both the facilities and the capacity to develop acute care as part of an NI network of acute hospital care in NI. It is essential to maintain acute care in this area as failing to do so will increase mortality rates in an area which already has the fastest fall in life expectancy in NI from 83 to 79 in just 4 years. We needed Pathfinder to be genuine but its agenda was clearly laid on page 10 of its Project Initiation Document, where SWAH was judged unsustainable and so new models of care were needed so the WHSCT can remove the need for Locums in SWAH, which can only result in the collapse of acute care at SWAH. https://abridgetoofartobefairtofermanagh.wordpress.com/pathfinder-project- intiation-document-pid-response/

We needed Pathfinder (which lost all credibility locally) to be genuine so we could work with experts to find out why we in Fermanagh have a 60% rise in lung cancer. No one can tell us why. Without understanding the rising cancer etc here how can anyone design services for this area. Your department plan is about our health. You need to work with us, understanding our profile and challenges in order to design health provision for our community that is fair, equitable, accessible and meets the needs of our health profile and works to counter inequalities here. When we discovered the truth about Pathfinder we met with and appealed to the new Chairman for two things; to allow us to be heard by the WHSC Trust Board and for the contact details of the non- executive directors of the Trust board, who are supposed to represent us. Altnagelvin development always priority for a trust board. We have no representation from Fermanagh on the Trust board and both CEO and Chair refused to give contact details for the non-executive directors who are meant to represent our community, so no concerns from the Fermanagh community could be heard.

Recruitment to SWAH. The recruitment of staff into SWAH is an issue but there is much that can be done to solve this but again we feel this is another reason for vital close co production with front line staff and the community. We all have a role in bringing and keeping staff in SWAH. We know things like exit interviews were not being done, we hear of many staff feeling bullied and intimidated. The management style is heavy and just the opposite of healthy, flat, co production structure Bengoa said was needed to drive sustainable services. Services must be accessible at SWAH and we must get patients diagnosed quickly. Technology, video conferencing etc can be used to access consultants even via GPs. Fermanagh people should not have to travel to Belfast or Derry for appointments as much as they do. There must be equality in provision. We can provide for other areas and cross border working to create sustainable accessible care. Just like we must remember what Bengoa said about co production and telling people the truth etc we need to remember other reports commissioned by the Department like Developing Better Services (extracts in link below) which put acute care in Enniskillen to save lives. The Golden Hour is now the golden 45 minutes meaning trauma care etc are needed even more in SWAH to ensure equity in health care for Fermanagh people and neighbouring areas also suffering common peripherality issues.

In reality there are many, many steps that are needed which the WHSCT and Dept have failed to implement to sustain services by improving recruitment in SWAH.

We want to see and indeed must have co- production and appropriate democratic processes and consultation now because we can see so many failures by the people who are now according to your letter to Council, planned to make up the board to allocate provision. Steps that should have be taken to make SWAH sustainable including those outlined by the World Health Organisation in the link below; highlights the need for our MLAs to ensure civil servants adhere to the principle of health equity. This is yet another reason to halt this civil servant take over as at our community level in Fermanagh we see, feel and experience no such respect for any principle of equity in health care provision in Fermanagh. We are simply labelled ‘rural and dispersed’ and somehow that means our lives do not matter as much as people in Belfast or Derry or that its too expensive to provide us with the staff and services we need to access to maintain our health, so we must be abandoned to token gestures of lesser care, a nurse or a pharmacist instead of a doctor, so all other areas of NI get what they need when and where they need it so their mortality rates do not increase due to services being far away from them.

World Health Organisation’s recommendations include;

Adhering to the principle of health equity will help in allocating available resources in a way that contributes to the reduction of avoidable inequalities in health. And grounding rural retention policies in the national health plan will provide a framework for holding all partners accountable for producing tangible and measurable results.

WE MUST HAVE CO PRODUCTION, DEMOCRACY, ELECTED REPRESENTATIVES AND PUBLIC CONSULTATION WITH GENUINE LISTENING TO ENSURE THIS PRINCIPLE OF HEALTH EQUITY BECOMES OUR REALITY AS WE ARE LITERALLY DYING FOR CHANGE HERE – ESPECIALLY WOMEN IN OUR COMMUNITY https://abridgetoofartobefairtofermanagh.wordpress.com/recruit-and-retain- staff/

“The lack of clarity about who is in charge is a major problem for Northern Ireland care system. The difficulty is not that there is no figurehead, but that strategic leadership does not have the visibility of other systems. Without a clear leader, progress is piecemeal and change is hesitant and not driven through at scale – the Review Team was told “there are more pilots than in the RAF” ..Donaldson review.

The management structures that exist are part of the problem in NI. If the proposed Dept plan goes ahead the same people who are part of the problem will be in place to try to solve the problems – this will not work. We must have independent people, co production, MLAs, consultation, openness and truth at the heart of change here. Given the lack of development of SWAH, the horrendous hidden agenda of Pathfinder, we do not have trust in our WHSCT and representation by Anne Kilgallen on the proposed management of the new Dept Plan. The priority is saving Altnagelvin and then Omagh as it has a good access road down from Derry / Londonderry that some are prepared to travel, and using SWAH simply to generate savings by removal of locums. Fermanagh must have equity of access to acute care. https://abridgetoofartobefairtofermanagh.wordpress.com/management- structures-and-costs/

As recently as February 2020 Anne Kilgallen denied many of the issues regarding Pathfinder and the future of acute services for Fermanagh https://abridgetoofartobefairtofermanagh.wordpress.com/pathfinder-feb-2020- meeting/

Your obligations We feel the Dept Plan to take over decisions on service provision in the manner outlined seems to us to break both the civil servants code https://abridgetoofartobefairtofermanagh.wordpress.com/civil-servants- decision/ and also our human rights to participate and be consulted outlined by the NI Public Services Ombudsman. https://nipso.org.uk/site/wp-content/uploads/2017/02/NIPSO-Human-Rights- Manual.pdf

We cannot allow our Mortality Rates to Increase under your plan - as life expectancy for women here is already falling so fast. This report from the Independent Kings Fund shows the evidence about reconfiguration of services – and proves that our mortality rates in Fermanagh will increase dramatically if acute services are removed from here – by 15% because we are 150 km from other acute services!

This means we must have services in SWAH stabilised and part of an equitable network of acute care with people travelling to SWAH from other areas in NI equally as much as Fermanagh people have to travel. If we lose services at SWAH the people of Omagh will lose acute care provision twice! Our acute services are co dependent and will fall like dominos if you chip away at them. https://abridgetoofartobefairtofermanagh.files.wordpress.com/2019/06/reconfig uration-of-clinical-services-kings-fund-nov-2014.pdf

Fermanagh people are further disadvantaged by the burden of PFI on SWAH PFI repayment costs are counted into HRG (Health Related Group) cost which is how procedures are priced across each trust in NI. and UK.

This makes the cost of procedures in SWAH the highest in NI which leaves SWAH the highest in NI which leaves SWAH at a distinct disadvantage. However there are many solutions to this – we do not have faith in this new management committee proposed by the dept of health to resolve this issue that must be sorted out so that we can have equity in health care and develop SWAH as it should be to benefit all the people in this region so they have fair access to health care. https://abridgetoofartobefairtofermanagh.wordpress.com/pfi-burden-on- fermanagh/

Given Anne Kilgallen’s performance re Pathfinder, we do not have trust in her representing us on this new proposed management board. As co author of the Pathfinder Project Initiation document linked above, her judgement of SWAH of unsustainable and the need for new models of care etc to remove locums from SWAH due to cost etc had no regard for the law in NI in regard to our rural needs. Our lives are not worth less just because we are in a rural area and we are isolated. The Rural Needs Act (NI) 2016 (the Act) provides a statutory duty on public authorities to have due regard to rural needs when developing, adopting, implementing or revising policies, strategies and plans, and when designing and delivering public services. https://abridgetoofartobefairtofermanagh.wordpress.com/the-law/

Enniskillen location is not Omagh, people exist in , , , Garrison, Belleek all over south and west Fermanagh. Five years of independent review by the Hayes Review made the tough and locally sensitive, and very difficult decision to locate acute services in Enniskillen, because when services are in Omagh over 10,000 people primarily in the south and west of Fermanagh are left over an hour away from access to acute care. In other areas the Golden Hour is now the golden 45 minutes – leaving 25,000 people in south and west Fermanagh outside 45 minutes from acute care. After Developing Better Services report was published and an investment and repayments of £700 million was committed to provision on acute care in SWAH - because independent teams said our lives mattered. SWAH never got the chance to develop as it should to serve the people in Fermanagh and Omagh. The community in south and west Fermanagh are now often diverted from SWAH to Omagh and beyond for their appointments taking them over an hour to access care. Distance Decay means services do not meet needs as they should when they are further away. https://abridgetoofartobefairtofermanagh.wordpress.com/cummulative- impacts-of-isolation/

This has been our experience of the WHSCT efforts to reform services in Fermanagh https://abridgetoofartobefairtofermanagh.wordpress.com/

It seems to us that our taxes used to fund the Dept of Health now seems beyond the normal governance and accountability we expect to be in place in a democracy we voted and paid for. We seem to be witnessing a civil servant coup, ending democracy and accountability. No one voted for this. The statements laid out in your letter to Fermanagh Omagh Council are anti- democratic. The long running crisis in Health care in NI when civil servants have been in so much control when the executive was not in existence for years tell us that we need co production now more than ever. The front-line staff need genuine listening and power sharing along with the community. We did not get that from the Pathfinder plan – staff were interviewed selectively by management when we needed independent listening they did not fear. Our community was not told the truth about Pathfinder’s agenda, and they were not told the truth about their health profile. Bengoa was clear on the need for telling the truth. https://abridgetoofartobefairtofermanagh.wordpress.com/pathfinder/

Have the lessons from RHI been forgotten already? Civil servants were out of control and elected representatives let them do it. We cannot afford to allow this to happen with our hospital and care services.

We could not get co production to function at all during Pathfinder. Please see this link for our experience. Bengoa was very clear about how vital genuine co production is in service provision. We believe if genuine co production was in place we could make real positive changes happen. We are deeply concerned that the people who will not allow co production to develop now plan to take control and force changes without it. https://abridgetoofartobefairtofermanagh.wordpress.com/experts-by- experience/

Even the Change or Collapse report referred to the expressions of concern about the centralisation of power in health and social care in NI. https://abridgetoofartobefairtofermanagh.wordpress.com/change-or-collapse- report-july-2019/

Many people described a high degree of centralisation of power in health and social care in Northern Ireland. This is difficult to reconcile with the initiative and experimentation necessary for complicated change where the answers are not fully known.

This communication from the Department regarding its planned take over of health care provision reflects our experience with the WHSCT. Bengoa said Co Production should be made mandatory it seems that no level in our civil service or health trust is prepared to give up its hold of power. The same people that created a lot of the problems in our health service cannot solve the problems in our health service. The structures and management are part of the problem – you cant solve these without outside input and scrutiny.

This Dept plan gives too much power for civil servants with no oversight. They are not answering to legislature. What is the point of us electing and funding MLAs in Stormont, the health committee who should make policy and then instruct the civil servants to carry out that policy and do it in a transparent, unified and equitable way if we are to allow our elected representatives to simply allow the civil servants full control to make all policy and decisions? In this proposal civil servants are not answering to our elected representatives and not consulting with the community on any changes to our health care that affect us. Policy and decision making is not coming from our MLAs who should be listening to the community they represent and directing civil servants on policy and provision accordingly.

Putting the proposed management outlined in the letter from your Dept in charge of challenges cannot solve the situation. The same people who caused crisis can’t solve it. We need one health trust in NI, to provide equity of provision, training, allocation of trainees, staff and services fairly across NI including Fermanagh. However this management plan puts the Trusts CEOs in power, just when we need to save money and reduce duplication in administration and get a fair plan for all in NI. There is a clear conflict of interest. They are earning high rates of pay in their roles. We are concerned they may not resign and dissolve their boards and trusts in order to improve functioning and equitable care in NI even if they could see it would see services and staff fairly allocated and accessible across NI. What is the cost of this new board and new arrangement? We fear without appropriate listening and democratic process it will become another waste of valuable funds. We have serious concerns about governance, accountability and independent monitoring in what is proposed. Who appointed the selected management board?

One NI accountable health trust with equity of provision in health care, staffing and services is urgent. This needs to come from the health committee and health minister.

Many reports show that centralising services away from needs does not actually save money but does increase trauma and mortality rates and we know it will increase costs on a community that cannot afford it. SWAH has the capacity and the facilities to meet the health needs of people in this region suffering from access issues that increase mortality and decrease uptake. The energy and commitment of staff and their standards of care are high, but their moral under current management is low and they fear for the future. With the right listening, and engagement SWAH has the capacity to play a major role in solutions going forward. There are two sides to the M1 motorway – people can travel to Fermanagh and should at least as often as we have to travel and more if that is what it takes to create fair access to acute care. Remove duplication in elective where you can but acute care in this region must be enhanced with technology to improve access to consultants.

When we look at your track record in decision making on allocation of services, as a Department. (for example, in regard to Breast care services for our women whose life expectancy if falling a year each year), we see you put provision in Derry, Antrim and Belfast, totally inaccessible for us in Fermanagh. Just one of the reasons we feel we can’t trust you. Between examples like this and Pathfinder – we feel it is vital that we have fully functioning democracy, accountability, scrutiny and genuine co-production with the community and our highly valued front line staff who are long overdue listening from someone independent they feel comfortable to talk to in confidence that they can be heard without fear of threat of disciplinary action, bullying or intimidation which has gone on too long.

You use the cover of the COVID crisis to take over power in provision of services. Yes, medical professionals were under pressure but COVID is primarily a community health issue and the solutions such as mask making and wearing etc rest with the community. We did so much work to educate our community, close schools etc before directives came. But we could not get any of the co-production we needed. There were so many efforts to support staff and those with the virus in the community that were extremely frustrated by the lack of respect for community efforts, lack of communication and lack of listening and working with the community. PPE and essential monitoring equipment could not be got to families with the virus, other PPE was held inappropriately when desperately needed by carers etc. WHO recommendations for community preparations, which involved listening to the community etc were ignored.

We need change, its urgent for our community, but we believe your planned team are not the right people to bring us what we need to improve our health care and safeguard our lives. Our experience of the WHSCT and Dept plans so far as not given us confidence. Co-production Bengoa said should be mandatory seems an alien and unaccepted concept at all levels in health provision in NI. You suggest its respected. We are not feeling that because it is not translating into law, action or reality.

We appeal to you to stop your plan for your select management group to make decisions on health care provisions. We will appeal to the Minister of Health, the Health committee and MLAs to halt this plan in favour of a democratic process, with public consultation on all changes that impact our community, and genuine co production.

We appreciate you are taking actions to do what you believe is right at this time. However, your values, interests and concerns may well not be the same as ours as our experience is unique to our situation. Our health care needs to be designed to meet our needs and realities or it won’t work and our mortality rates will rise – our women can’t afford that as their life expectancy is falling fast. We believe that our normal democratic process, co production and public consultation is the right way to make change and design solutions to challenges in the short, medium and long term. We believe that our elected representatives, with some truly independent listening facilitated with our front- line staff and genuine co-production with the community and staff will bring real changes that will strengthen our community health. Giving people ownership

The public should be honestly informed about why change is needed. Service users should be supported and encouraged to become ‘informed and expert patients’ who take individual action to manage their own health and well-being. P.37 Bengoa Report

Your sincerely

Trevor Armstrong Chairman PS below just a reminder of Health and Wellbeing report on Co-production in the spirit of this we wish this email to be forwarded to all on your proposed management board with a request that we be heard at the earliest possible opportunity should you be determined to continue as you planned. But we hope most of all that you will respect the elected representatives and the communities they represent as no one is equal until we all are.