Personal Health Budget (PHB)
Having won the appeal at the tribunal held on 12.8.2015, I was very relieved to be advised that NHS would assume responsibility for all monies paid out for Pauline’s health care since the date of the meeting held at our home on 12.12.2014. By the time cash started to flow the PHB was effectively backdated almost 12 months. This replenished our savings to a large extent. Future costs of healthcare at home were covered 100% as required long – term.
The NHS from April 2014 in England gave everyone eligible the option to have Continuing Healthcare at Home via a PHB. This enabled people to manage their care in a way that suites them through individual choice and control. To arrange and pay for your own support in this manner NHS requires a PHB to be set up with a “Support Plan” setting out the Health Needs and Outcomes. This “Plan” details the amount of money available, and how this will be used. The “Support Plan “is checked and agreed by CHC Team who then liaises with the CCG who administer the payments. CCG make these payments 4 weekly to the PHB Account.
In a National Pilot study of the PHB payment system NHS found that some people made different choices and bought services, care and support, that they knew would help them, and which the NHS did not ordinarily provide. This is possible, as long as it can be shown that the choice you wish to make is safe, is of benefit to the health needs, and can be purchased within the limits of the budget available.
An undertaking is required by NHS that the PHB will not be spent on non-Healthcare expenses like Rent, Food, Utility Bills, and definitely not on holidays. All of which could no doubt be of help to overall healthcare, but should be funded entirely separately.
A separate Bank Account has to be set up to facilitate the PHB finances and make payments out for acceptable healthcare costs only. The Bank Account will be audited by CCG, and a record of income and expenses has to be maintained for this purpose.
The Support Plan & Agreement
This is provided on paperwork supplied by CCG so that their office knows what the care choices are and how the health needs are to be achieved on a Daily basis. This is therefore a very important and practical Document, so that the “Needs “are accurately recorded and understood by the people responsible for the Healthcare at Home via your PHB. The plan also contains space for personal Details, contact phone numbers, next of Kin, and who the carers are that will be personally involved.
After the Support plan paperwork has been completed CCG will want to establish a “Support Agreement “, and the procedure agreed to administer the PHB in a manner that can be easily audited. For instance if a “Nominee “is to be used they will be noted, or a “Third Party Agreement” arranged if payments are to go direct to a Care Provider Company. If you want the PHB to come to your own Bank Account a “Direct Payment” will need to be selected. You can employ your own Live In carer but will have to be responsible for all the Employment Law compliance. If approved the PHB will have provision for the Extra costs of Employment like Indemnity Insurance, Payroll Services, Protective Equipment, Bank holiday and carer holiday provision etc. We however preferred to leave all of these responsibilities in the capable hands of Home Instead Senior Care as a professional Employer who could keep up to date with and compliance with Employment Law.
As Pauline suffered from Alzheimer’s disease and could not administer a Bank Account alone we established a Joint Account to receive the PHB payments, and I dealt with administration personally. As I was on my own in this regard an Additional signatory was appointed just in case I fell ill, and was unable to deal with the payments. Fortunately Pauline’s sister called in weekly and was happy to be included in these arrangements.
Once the paperwork is completed to the satisfaction of CCG they will make a home Visit in order to make an Assessment of the Budget required using a Nursing Expert together with a Case Manager who will quantify the costs on a weekly basis.
For Pauline’s needs at home for personal care, nursing care, and social care we had to cover the fees required by Home Instead Senior Care. There were different rates charged for Weekday and Weekend cover plus Bank Holidays whenever they occurred. Additional contingencies like extra cover so that I could have Respite care and time off to look after my own health were included, and budgeted accordingly. This was allowed for by costing out provision for carers to do sleepover nights adding in the hourly costs per week. When the total per week was calculated this was then paid across 4 weekly to the Designated PHB Bank Account.
The CCG stressed the need for us to review the PHB on a Quarterly basis to ensure it met the actual requirements long – term. This was particularly important when Pauline’s health deteriorated alarmingly after only 3 months from my meeting with CCG.
Pauline’s Final Weeks
Pauline was admitted to Addenbrooke’s Hospital on Boxing Day 2015 suffering from chest pain and was immediately placed on the cardiac ward to be monitored closely. A suspected heart attack had occurred or was still taking place according to the paramedics who I requested to call at our home. In fact neither of these had occurred, but because of Pauline’s Diabetes, damage to one of her heart Valves had occurred in the past but the resulting pain had not been felt. One would have thought further Tests should have been made by the hospital but these were not suggested before Discharge.
Due to Pauline’s Alzheimer’s disease, I still kept on the carers and they called at the hospital to ensure there was adequate personal care in the mornings, and social care in the Afternoons. Pauline was very appreciative at seeing her usual carers as the hospital environment is not pleasant for people with Alzheimer’s for a number of reasons. Although the staff were no doubt lovely people there were regular changes of staff as shifts changed 3 times a Day, and meals were particularly difficult as Pauline could either not reach the food provided before it was taken away, or required feeding and the staff were not available or too busy to help her. It’s not surprising patients lose weight in hospitals or suffer from malnutrition in my opinion! The hospital were careful to note Pauline’s health situation in A & E prior to going on the Ward, but I saw no staff trained in Alzheimer’s care actually assisting Pauline in the practical Daily Living issues every day. We were very reliant on our own carers, and myself staying each Day until Visitors’ were asked to leave each Evening, so that Pauline was cared for as well as possible until Discharge.
On 7.1.2016 Pauline was discharged to our home with a large Bag of medication, including new Tablets because of what the hospital described as “Heart Failure”. We were assured this was a general term meaning there were heart problems, but with the right medication further problems should not occur and several years life expectancy should be enjoyed.
It was pleasing to note that a stay in hospital at the expense of NHS of up to 2 weeks does not have an impact on the PHB administration. Funding continued to be paid by CCG.
Pauline’s chest pain was not helped by the new medication, and she was not well enough to attend a Follow up Appointment which was cancelled. I called CCG in the circumstances and explained the new situation. The level of Daily care was increased by 50% and due to her weakness following the stay in hospital double incontinence was also now an issue. We managed not very well at home until we could see our GP again on 11.1.2016, and he arranged for an immediate Re Admission, sending us off with a Letter to hand to the hospital on arrival.
After another 6 hours in A&E in 11.1.2016, Pauline was Admitted onto a General Ward for further tests at Addenbrooke’s Hospital. One of these tests was a C/T Scan of Pauline’s Lungs as the chest pain was still extreme. We got the Results on 13.1.2016 and Pauline was Discharged 24 hours later after the Consultant in charge of the Ward had an opportunity to meet us. To our shock and horror we were told Pauline had melanoma cancer in Both Lungs, and there was no treatment available as the condition was too advanced. I mentioned under the “Breathing “Domain of the DST that Pauline had a mole removed just over a year before, and understood there were no further complications expected. The consultant, although sympathetic, could do no more for us in hospital and Discharged Pauline immediately with a Large Bag of new medication including morphine for pain relief. They also supplied a comprehensive book called “End of Life: a Guide”. The 128 pages guide was for people in the final stages of life, and their carers. It took me 3 days to recover from the shock of Pauline’s Discharge and the manner this was conducted. I then started to get very angry with the hospital and their inability to detect such a massive health condition, and treat it months or even Years earlier. Pauline was not a smoker so Lung problems never occurred to us, but a patient presenting chest pain to a hospital, who had been an inpatient 2 years earlier should have had a precautionary C/T Scan of their Lungs in my opinion.
The hospital took action to refer Pauline to the Local Palliative Care Team, and I got CCG to further increase our NHS Healthcare at Home so that the carers were calling 3 Times Daily plus Overnight sleepover cover with immediate effect. We then had the equivalent of hospice care at home as it was Pauline’s Wish to die at home in familiar peaceful surroundings. CCG to their credit did not complain at the substantial increase in the costs of our PHB. The melanoma Outpatients clinic at Addenbrooke’s were consulted on 27.1.2016, and were pleased to authorise an increase in the dose of the morphine pain relief, and confirmed that no further treatment was possible. They advised Pauline could live for a further year, or her Death could occur in a few months. The Palliative Care Team came to visit Pauline immediately the following day, and were very helpful arranging a hospital Bed which arrived 24 hours later. A member of their staff was appointed as the NHS’s “Lead Person” via whom all services would be coordinated. The person was charming and well trained, and prepared to go the extra mile to be helpful to us. Our own Church was very supportive as were our Friends and Family. Pauline died on 9.2.2016, less than 2 weeks after our last hospital Appointment. I should mention that her death was very peaceful and her strong Christian Faith was of great comfort to us both.
The PHB set up by CCG was adequate to provide for all the care needs required at home, and in fact there was a surplice of almost £4,000 which I returned to their office before closing down the Designated Bank Account.
Pauline’s Death On 9.2.2016
Although the Diagnosis of melanoma cancer was an enormous shock for us and everyone who knew and loved Pauline, mercifully the end was very quick and peaceful. Most importantly Pauline Died at home where she wanted to beside a Window overlooking her beloved Garden. This would have been very different in a hospital or hospice Bed where strangers may have been present, and pain may have been an issue. Also we have given thanks that Alzheimer’s did not develop to an extent that a loss of dignity would have had to be endured. With hindsight we could not have wished for a better death for Pauline and relief from her suffering of the last few weeks.
Was The Effort To Get NHS Continuing Healthcare Worth It?
The struggle to get the PHB from the initial GP Appointment in October 2014 to the Appeal Tribunal on 12.8.2015 was with hindsight 10 months very well spent. It would however have been far less stressful if NHS had properly Assessed Pauline on 12.12.2014.
The main difficulty was getting NHS to agree that Alzheimer’s disease is a “Primary Health Need”. The information recorded at the meeting on 12.12.2014 incorrectly noted Pauline’s needs so that the team which considered the Results stated that “Pauline does not meet the criteria for NHS Continuing Healthcare”. They did not consider that the “nature, complexity, intensity and unpredictability of the totality of her needs warranted this award, and that her needs were predominantly for personal and social care”. Had the DST been recorded correctly then the Result would have been entirely different. Our GP considered Pauline’s needs were adequate, and so did I after discussing the subject with the Carers Support Team. I concluded therefore that NHS was making claims of this type difficult and as a routine were declining Applications in order to save money and keep within NHS spending targets. A fight for our Rights was therefore necessary.
I expected to nurse Pauline at home for many years so it was vital that NHS were made to comply with their obligations to provide healthcare for Pauline’s needs long term. It was very unfortunate that Pauline should die from an unrelated and undiagnosed condition only 6 months after winning the Appeal, and getting NHS healthcare provided at home as requested. As the PHB was in force when Pauline got seriously ill from a terminal condition the income was increased very quickly in accordance with the increased needs. This was dealt with very efficiently by the CCG and the Specialist Nurse appointed to supervise our individual needs. They were available via email and telephone to respond efficiently, including home visits, with genuine sympathy for our situation. Had I not fought for Pauline’s Rights the last few months would have been a lot worse for her, and for my own health.