"Blockades and barriers every step of the way"

I am the wife and carer of my beloved husband who was discharged from hospital as critical need. I struggled for one year supporting my husband without bathing facilities due to a horrendous experience with the local authority in the East Kilbride locality. It took one year to reach the installation of a wetroom during which time he was forced to have all PC met whilst in bed including toileting. The experience left him humiliated with loss of dignity, respect, privacy and in breach of his human rights. 

I was strong and independent in full time employment who realised work life balance proved difficult and therefore I became a full time carer. I am under retirement age and do not receive carers allowance as I receive ESA and ironically you can’t receive both. 

I will have 30% loss of private pension due to a shortfall in contributions for 6 years. Having made those sacrifices to care for a loved one at home where he belongs and avoid being placed in a care home all I was reaching out for was to be supported and I am saddened to say the social care system is appalling and not there to support in time of need. 

In January 2025 there was a significant deterioration in both my physical and mental health this was two fold fighting against what I feel is a broken social care system together with caregiving had taken its toll. I reached out to my GP for help together with having a home visit carers assessment completed with SW OT East Kilbride and Lanarkshire Carers who both deemed critical and substantial. Based on this the decision for a carers budget was denied in February 2025 being told my only option was Independent Living Fund (ILF) application for my husband to which I authorised the OT to complete. I followed up with OT for an update and was told a call would be made to chase up ILF. Months were passing by and I called ILF to be told the application was only submitted by OT on mid August 2025. There has been a dormancy of 6 months where nothing has been done to support what has been recorded as critical and substantial needs case. The conclusion to me is nobody cares, you are made to feel worthless and that you don’t matter.

Even worse is the fact that within the social care system it is like it has been normalised to say no! Not to meet individual needs. Not to dignify an individual but humiliate them instead. It has been normalised to not care and shrug shoulders and to accept that is how it is. It has been normalised to not provide much need aids but to instead self direct to purchase. Social service is receiving Scottish Government funding and one of the pots held is for Carers who have the right to access that budget if deemed in need to, which I was. Why is the social care system not supporting my wellbeing in turn for that I support my husband? Instead you are worn down to your most vulnerable state in desperation and ignored!!

I took on my caring role and responsibilities with pride, compassion, strength and commitment. It is shocking to expect me to be on call 24/7 7 days a week for 2 years without time out, a break to recharge. In comparison an employee would not work for 2 years 24/7 7days a week without a break, the difference being it is illegal and they have rights and carers don’t. 

The carers assessment has recorded I am suffering from exhaustion and sleep deprivation and expected to function in a caring role on broken sleep that is 2-3 hours per night. The OT advised during the home visit that the carers budget could provide a night shift staff member once a week to give me a rest. It could be used to promote my wellbeing but it has been denied. Whether my husband is awarded ILF or not it is irrelevant as that is for him. I am entitled to the carers budget, it is completely unrelated, irrelevant and a separate entity. What is the carers budget being spent on if not for carers? I view the social service decision as saving the carers budget for whatever and pushing towards ILF to be in their own favour it certainly is not in mine or my husband’s. 

I feel it is entrapment in a broken social care system, hell on earth with inclusion diminished.

Basic PC end of. 

I am reaching out to hopefully open the much needed communication link to discuss my experiences further.I believe there needs to be accountability and answers. No one should ever feel worthless, long term illness is not a choice it can happen to anyone at anytime and turn your world upside down. It certainly shouldn’t be life indoors forever more. I have a voice to express but for those who don’t they must suffer in silence. 

There is much more to our negative and distressing experiences for example when my husband relied upon medical intervention but was refused because he was sitting at home in a wheelchair and the ambulance crew wouldn’t take him because there was no ramp access at home because you are discharged from hospital without appropriate access in or out of your home. Ambulance service don’t carry telescopic ramps nor did they know where they are stored. I had 3 ambulances 6 crew and no ramp access it was totally humiliating and my husband’s health was left to deteriorate until ramps were finally located with the ambulance service. 

Blockades and barriers every step of the way. 

Thank you for reading!